A big thank you goes out to everyone who attended the National Child Abuse Awareness Day on Monday’s Press Conference on the Steps of City Hall 260 Broadway in New York, New York. It was once again a step closer to helping our children and young adults get the care they need. Showing your support helps us survivors know that the long term fight is worth it.
A special Thanks to the people who are involved and are signed onto our team;
“With more than 3 million cases of child abuse reported in 2011, this is a public health crisis,” stated Patrick Donohue, father of Sarah Jane Donohue and founder of SJBF. “It is critical we work together to prevent, identify, treat and eventually cure the victims of abusive head trauma/shaken baby syndrome and other forms of child abuse. We are very grateful to the police, district attorneys, politicians, doctors and other allied health professionals who devote their lives to protect our most vulnerable citizens, our children.”
"I am proud to stand by The Sarah Jane Brain Foundation and its important mission to raise awareness about child abuse and infant head trauma,” stated Representative Charles Rangel of New York’s 13th Congressional District. “We must work together to prevent future cases of child abuse, and to make sure that we invest the time and resources necessary to fully rehabilitate children who have already suffered from childhood trauma."
“Each year, millions of children become victims of abuse. As the leaders of tomorrow, it is our responsibility to provide a safe environment for all children to live, play, and learn. The future of our civil society depends on our ability to take a stand against child abuse today and every day,” stated Representative Yvette D. Clarke of New York’s 9th Congressional District.
"Fighting child abuse-- including infant head trauma and shaken baby syndrome-- is a cause all Americans can support, and I am proud to stand with them," said Representative Carolyn B. Maloney of New York’s 12th Congressional District. "It's vital that we raise the profile of this crucial public health issue, and National Child Abuse Awareness Day does just that."
"As the father of six beautiful children myself, I believe that it is very important that we stand together in solidarity with all the young people who have suffered from child abuse,” said Rev. Erick Salgado. “I will continue to fight for tougher child abuse laws in New York State and promote programs that will help prevent child abuse. Any parents who believe they need help in taking care of their children should immediately seek help from either a government or non-profit agency. Child abuse must never be an option."
“Tragedies like Nixmary Brown and Marchella Pierce have awakened this city to the need for real change and the way we protect vulnerable children. It’s our job as adults to shelter our children from all preventable harm like child abuse,” said Public Advocate Bill de Blasio. “We need to treat every incident of abuse or neglect as preventable. We need to apply every tool of government and every community resource to the goal of preventing harm to our kids. I applaud Sarah Jane Brain Foundation for its powerful advocacy.”
“Child abuse is a tragedy, and groups like The Sarah Jane Brain Foundation provide invaluable insight for policymakers in helping prevent all forms of abuse and neglect. And as victims recover, their families need seamless treatment as well as support from their schools and communities. They can’t go it alone, and they shouldn’t have to,” said New York City Comptroller John C. Liu.
“Child abuse is not an American problem, it is a global public health crisis,” said Dr. Maliheh Mohamadpour, Director of International Projects at SJBF. “Recent studies in Brazil, Chile, Egypt, India, Philippines and the U.S. showed physical punishment was used in at least 55% of families and harsh physical discipline ranged from a low of 1% in the U.S. to 2.3% in Brazil, 4.5% in Chile, 9.9% in Philippines, 28% in Egypt and in some areas of India up to 39%. These staggering numbers highlight the need to develop a Pediatric Acquired Brain Injury Plan (PABI Plan) all over the world and the Sarah Jane Brain Foundation is working to achieve this goal.”
Many leaders gathered on the steps of City Hall in New York City on Monday morning, April 22, 2013, as part of the national awareness campaign. Those who joined Sarah Jane and her father included representatives from all 5 District Attorneys offices of New York City and the New York City Police Department: Joseph Muroff, Bureau Chief, Child Abuse and Sex Crimes, Bronx County DA’s office, Miss Gregory, Exec. ADA, Crimes Against Children, Kings County DA’s office, Robert Hettleman, Chief, Child Abuse Unit, New York County DA’s office, Leigh Bishop, Sr. ADA, Special Victims Bureau, Queens County DA’s office, Yolanda Rudich, Bureau Chief, Special Victims Bureau, Richmond County DA’s office and Michael Keenan, Commanding Officer, Manhattan Child Abuse Squad, New York City Police Department.
About The Sarah Jane Brain Foundation: For more information, please read Patrick’s letter to Sarah Jane when she turned five: www.thebrainproject.org.
Craig Sears
The Sarah Jane Brain Foundation
101 West End Avenue, #23B
New York, NY 10023
212-576-1180
National Child Abuse Awareness Day in New York City
NYC Leaders Join Sarah Jane at City Hall
New York, NY – New York City leaders will join Sarah Jane Donohue, namesake of The Sarah Jane Brain Foundation (SJBF), along with other families, professionals, advocates, and political leaders to raise awareness of the leading cause of death and disability for infants in the United States, abusive head trauma, and other forms of child abuse. All five District Attorney’s offices of New York City will be represented. This will be part of the Million March Against Child Abuse national awareness campaign with events in over 200 cities across the country for National Child Abuse Awareness Day.
WHO: Sarah Jane Donohue, 7-year-old namesake of SJB and victim of child abuse
Honorable Bill de Blasio, New York City Public Advocate Joseph Muroff, Bureau Chief, Child Abuse and Sex Crimes, Bronx County DA’s office
Miss Gregory, Exec. ADA, Crimes Against Children, Kings County DA’s office
Robert Hettleman, Chief, Child Abuse Unit, New York County DA’s office
Leigh Bishop, Sr. ADA, Special Victims Bureau, Queens County DA’s office
Yolanda Rudich, Bureau Chief, Special Victims Bureau, Richmond County DA’s office
Rev. Erick Salgado, The Iglesia Jovenes Cristianos (Young Christian) Church
Dr. Ronald Savage, President, SJBF
Dr. Daniel Winchester, Advisory Board, SJBF
Dr. Shaheen Usmani, Advisory Board, SJBF
Craig Sears, Advisory Board, SJBF, survivor of traumatic brain injury
Patrick Donohue, JD, MBA, father of Sarah Jane and Founder of SJBF
Other families, professionals, advocates and political leaders
WHEN: Monday, April 22, 2013 10:00-11:00 a.m.
WHERE: Steps of City Hall 260 Broadway New York, New York
WHAT: New York City National Child Abuse Awareness Day event
WHY: Facts about Child Abuse:
• Over 3 million cases of child abuse were referred in 2011 nationwide
• More than 75 percent (78.5%) suffered neglect
• More than 15 percent (17.6%) suffered physical abuse
• About 10 percent (9.1%) suffered sexual abuse
• Child abuse costs the U.S. economy over $100 billion each year
• Abusive Head Trauma/Shaken Baby Syndrome is the leading cause of death and disability for American infants
• Over 1,300 severe or fatal cases of AHT/SBS each year
About The Sarah Jane Brain Foundation: For more information, please read Patrick’s letter to Sarah Jane when she turned five: www.TheBrainProject.org/lettertosarahjane.php.
TBI Awareness Month- Interview with Craig Sears
March is Traumatic/Acquired Brain Injury Month. To continue to bring light to this underrepresented issue, The Joye Law Firm is honored to bring you our second interview in our series. In this interview, Craig Sears, who is a widely recognized advocate for Brain Injury Awareness, shares the adversity he had to overcome as a brain injury survivor dealing with an uneducated legal system. He outlines the many obstacles he had to face because of the lack of knowledge for TBI/ABI victims. He discusses how this has set the path in his life to educate and bring awareness to this important societal issue. He has accomplished this mission through his own personal efforts, as well as through the support of The Sarah Jane Brain Foundation.
You can also read his response to our questions below.
Questions for Interview- Craig Sears
1: First, what led you to vocalize your story and share it with the world?
Craig spreads awareness at the Capitol
• During my lifetime, I have been confronted with challenges, obstacles, and disappointments. The purpose of sharing my experiences with everyone is not to blame, shame or to point a finger in anyone's direction. I have found that little benefit comes through such behavior. Living life on life's terms, to me, means that I deny the notion that I am a victim of my circumstances.
2: Your story is truly moving and I encourage everyone to read you're full Bio on Wikipedia- but for those listening could you share a bit of your story with us?
• I came up over a hill and there was a car going the wrong way. It was too late. I couldn’t stop and we collided. I was thrown nearly 40 feet over on-coming traffic. I was not wearing a helmet and I landed head first into a curb, just missing a telephone pole. I have no memory of the next 6 months. That period of time is a Black Hole in my life. I was in and out of a coma, undergoing multiple surgeries. The doctors operated on my head, and did what they could to patch up my body. This was the beginning of my physical recovery.
• Though my body was healing, a bigger problem went untreated. And no one realized it. Insult was added to injury. This is where I fell through the cracks. Despite having my head in a cast, no one identified the true nature of my injury as being a Traumatic Brain injury. That oversight would cost me dearly in the years to come. I had no idea of the hell I was in for. Had I known what lay ahead, I would never have fought so damn hard to make it. I would have given up, lay down and died. My struggles were constant, and I had to relearn everything. How to walk, how to talk, how to eat, how to use the bathroom; How to care for myself, and then there was the incessant pain, the physical pain of my body overcoming weakness and injury. Worse yet, there was the anguish of not knowing who I was.
• Things went from bad to worse. Soon, the treatment center I was in transferred me to a mental health ward in Bridgeport Hospital. I spent the next 9 months locked in against my will, slowly regaining my memory. It was a locked ward and the doors only opened when someone came in or out. I started sneaking out when they would bring in breakfast, lunch or dinner trays. I would run to the back stairwell where the service elevators were, jump in go to the first floor and dart out the front or side door. I would get a couple hours of peace before I would get brought back by the police, because the hospital would always call them and tell them I had snuck out again. I was angry and I wanted out. I would sit by the phone for hours trying to figure out how to make a call out. I finally figured it out and began calling out to anyone who would listen to me; Town officials, State Government anyone who could get me out. While I knew I didn’t need to be there, I did know that I needed help in other areas. But the help I needed wasn’t available. This was not a mental health issue.
3: Could you tell us a little about the Sarah Jane Brain Foundation and your role in this movement?
Craig meeting with legislators on TBI
• I am now advocating in efforts to share my experiences and struggles, to offer support and encouragement, and to instill hope and a sense of faith. Advocating has given me a new sense of purpose, while I personally continue to heal and recover. I strive to help others realize that they are not “alone” in their own personal struggles.
• As a Traumatic Brain Injury advocate, I am adding my support to the Sarah Jane Brain Foundations goal for creating a national model care system for children suffering from all Pediatric Acquired Brain Injuries (PABI). This program is sorely needed, and it will help thousands of children and their families overcome the difficulties following a Traumatic Brain Injury (TBI). It will also help raise awareness of TBI and help the thousands of other American adults who yearly suffer a TBI as result of accidents, falls, strokes, or by other means. And it will help protect the children of tomorrow from ever having to experience the horror and heartache of TBI. This coupled with the growing awareness that thousands of our troops returning from, Iraq and Afghanistan…. too are suffering from TBI. This injury is being called the signature wound of these conflicts.
4: Do you feel like Brain Injuries are overlooked or stigmatized in our society?
Craig helps children through The Sarah Jane Brain Project
• Oh yes absolutely!! For years, I felt as though no one else knew what I was going through, but believe me; Traumatic Brain injury survivors almost ALWAYS experience the same things.
• People aren’t aware of brain injuries. No one thinks brain injuries will affect them or their children. A lot of brain injured people look perfectly normal. Imagine having a disability that caused you to slur your speech, made it difficult for you to learn new things, and affected your balance. Now imagine that no one knew you had this disability. That’s what it's like for people living with a disability as the result of a brain injury. Brain injury is known as an invisible disability because there are often no outward physical signs of the disability. It's not like falling and breaking a leg, where you see it and it heals. A brain injury can last a lifetime. There is no cure, only awareness and prevention. After that there's only support.
5: What do you think is the main reward that people get from your efforts?
• HOPE! To know someone is out there talking and actually speaking up.
• The one and only way that a change is possible is if enough people have become fed up. But if people don't come forward it will continue. The only way we can grow by letting people know we exist and we are fighting for everyone
6: How do you deal with your day to day personal challenges knowing that you have to inspire others?
• Day after day I get emails about the horrible things that the US States are doing to brain injury survivors. They need to be stopped; we have rights for a reason, but the State's trample all over them as if they are immune.
7: What motivates you to continue with your work?
• The kids other survivors!! The values we live for are worth more when we pass them on… I have been an active and effective advocate for the brain injury survivor community and a participant in the Acquired Brain Injury (ABI) Waiver Program for several years. Prior to obtaining waiver services, and as a result of a lack of community-based supports, I was imprisoned and institutionalized. It is my goal to continue to strive for independence with appropriate supports, and to continue my advocacy efforts for other survivors.
8: What has been the biggest challenge since you gained your voice in 2008?
• Over time everyone in my family has moved out of Connecticut and they have asked me to go with them, I looked into it and was told that there is a 5 year waiting list for any ABI Services, and in order to get on the waiting list in that state that I needed to live there for 2 years before I got put on the list; been there, done that. It's bad enough trying to find anyone that knows anything about brain injury. I've been a participant in the Acquired Brain Injury (ABI) Waiver Program for several years in CT and I have YET to find anyone that I don't need to tell what to do, or anyone that does not talk down to me like I'm a 2 year old, or even try to get one over on me! I have kept in this ¨box〃 where I’m very limited on what I can do. I believe that my rehabilitation has been curtailed as a result. I am frequently required to see a doctor or go into a state team meeting and prove that I am disabled.
9: Do you have any final thoughts you would like to share with our listeners?
• Never give up, this too shall pass – Not to give up under any circumstances should be the motto of our life: we shall try again and again, and we are bound to succeed. There will be obstacles, but we have to defy them. So do not give up, do not give up! Continue, continue! The goal is ahead of you. If you do not give up, you are bound to reach your destined goal.
• ”Things work out best for those who make the best out of the way things work out!”
• The Sarah Jane Brain Foundation and supporters devote their lives to helping children and young adults who suffer from Traumatic Brain Injury, which is the leading cause of death and disability in the United States. I am asking you to please take five minutes and read my story and share your thoughts with as many people as you can to raise awareness of TBI to shine light on this silent epidemic. In turn, someone else who has had an experience with TBI may find some help and understanding, which they so deserve.(Chances are someone you know has experienced something very similar and can benefit from this.)
Craig Sears
The Sarah Jane Brain Foundation
New York, NY 10036
212.576.1180 212.576.1180
craig@thebrainproject.org
www.TheBrainProject.org
https://twitter.com/craigsearstbi
Google +
Here is the link to the article: http://www.joyelawfirm.com/blog/2013/03/tbi-awareness-month-interview-craig-sears/#ixzz2OStaFQqY
Living with a Traumatic Brain Injury
For years, I felt as though no one else knew what I was going through, but believe me Traumatic Brain Injury survivors almost ALWAYS experience the same things.
I hope through my story you will become enlightened on the obstacles faced by Traumatic Brain Injury survivors and to my fellow survivors, "You Are Not Alone" Never give up, this too shall pass
Things work out best for those who make the best out of the way things work out!
I hope through my story you will become enlightened on the obstacles faced by Traumatic Brain Injury survivors and to my fellow survivors, "You Are Not Alone" Never give up, this too shall pass
Things work out best for those who make the best out of the way things work out!
Brain Injury Awareness
FRANK MONTANRO TO RECEIVE SJBF ANGEL AWARD
Brain Injury Awareness Month Event Recognizes Local Advocate
Providence,
R.I. – On Friday, March 15, 2013,
on behalf of the Sarah Jane Brain Foundation, Governor Lincoln Chafee will
present Frank Montanaro with the Cynthia Gibbs Angel Award for advocacy. The
award will be presented at a State House event featuring brain injury survivors,
families, advocates and professionals. The event will recognize Mr. Montanaro
for his advocacy on behalf of brain injury survivors
WHO: Governor
Lincoln Chafee
Patrick B. Donohue, Esq. – father, Sarah Jane Donohue and founder,
The Sarah Jane Brain Foundation
Frank Montanaro – advocate for brain injury survivors
Dr. Victor Pedro – SJBF Advisory Board Member, Founder,
Rhode Island Integrative Medicine
WHAT: Press Conference highlighting Brain Injury
Awareness Month and recognizing local advocate
WHY: Pediatric Acquired Brain Injury (PABI) is
the #1 leading cause of death and disability for American Youth (over 765,000
new brain injuries annually, over 80,000 hospitalizations and over 11,000
deaths). Frank Montanaro has been advocating for brain injury survivors
and helping to advance Dr. Victor Pedro’s pioneering evidence-based, unique
treatment therapy called Cortical Integrative Therapy which is changing the way
brain injuries and other brain-based disorders are treated. Mr. Montanaro was a
former Rhode Island State Representative serving from 1986-2004 and currently
serves as a volunteer for the Rhode Island Babe Ruth Baseball Little League and
Cranston Oak Lawn Grange.
The
Cynthia Gibbs Angel Award is
presented to a parent or caregiver of a child with a PABI who has significantly
advanced the field of PABI through their advocacy.
WHEN:
Friday, March 15, 2013 at 2:30 p.m.WHERE: State Room (2nd Floor)
Rhode Island State House
Providence, RI
Craig Sears
Advisory Board Family
Sarah Jane Brain Foundation
101 West End Avenue – 23rd Floor
New York, NY 10023
PH: (212) 201-0599
http://www.TheBrainProject.org
March is Traumatic Brain Injury Awareness Month
Senator Tim Scott from South Carolina with brain injury survivor Craig Sears
March is
Traumatic Brain Injury
Awareness Month. With a TBI occurring every 16 seconds, affecting 1.7 million
Americans annually, and being the leading cause of death & disability among
children & young adults we are literally in the fight of our lives as we
continue to bring awareness to this "Silent Epidemic".
The Mission of the Sarah Jane Brain Project is to create a
model system of care for children and young adults suffering from all Pediatric
Acquired Brain Injuries in order to advance our knowledge of the brain fifty
years over the next five years!
If you are wondering why the Sarah Jane Brain Foundation and
friends are devoting day and night to help children and young adults who suffer
from the #1 leading cause of death and disability, Please take just 5 minutes
out and read my story then share your thoughts with as many people as you can,
by doing this you will raise awareness of TBI and in turn someone else who
experiences this could get the help and understanding they so deserve. (Chances
are someone you know has experienced something very similar) http://thebrainproject.org/advisoryBoard/Craig_Sears/CV.pdf
ANSWER –
National Pediatric Acquired Brain Injury Plan Act (PABI Plan
Act). Also known as H.R. 2600, the act would enable the creation of a seamless,
standardized, evidence-based system of care that will be universally accessible
for the millions of American families affected by the life-altering changes and
challenges associated with brain injury. The plan would include youth aged 25
and younger who may be serving in the armed forces. Implementation of the act
will cover the entire continuum of care: from prevention, treatment in acute
medical facilities, reintegration into schools, communities and homes and then
transition into an adult system of greater independent living.
I support H.R.2600: National
Pediatric Acquired Brain Injury Plan Act
Craig Sears
Advisory Board Family
Sarah Jane Brain Foundation
101 West End Avenue – 23rd Floor
Sarah Jane Brain Foundation
101 West End Avenue – 23rd Floor
New York, NY 10023
PH: (212) 201-0599
http://www.TheBrainProject.org
PH: (212) 201-0599
http://www.TheBrainProject.org
March is Brain Injury Awareness Month
The Sarah Jane Brain Foundation
Sarah Jane Brain Foundation and CE Outcomes launches
brain injury survey
National Assessment for Brain Injury Awareness Month
New York, NY – The Sarah Jane Brain
Foundation (SJBF) and CE Outcomes announced a national survey to identify gaps
in services and research dealing with brain injury. This is a joint effort
during Brain Injury Awareness Month to understand the current state of brain
injury across the country and across two different clinical populations
(youth/developing brain and adult/developed brain). The survey will investigate
the differences in services between “Mild” TBI/concussions and moderate to
severe brain injury. In addition, the assessment will analyze across the
continuum of care from prevention to acute care/rehabilitation services to
reintegration/long-term care. The online survey is being hosted by CE Outcomes:
http://ceoutcomes.qualtrics.com/SE/?SID=SV_diBbqP4sSSTXIkR.
“This survey will include physicians,
psychologists, educators, allied health professionals, and most importantly
families and brain injury survivors across this country,” said Dr. Ron
Savage, President of SJBF and author of the survey. “We will have data from
thousands of voices to better understand the gaps in services that impact the
lives of millions of people. Those voices will be heard.”
About The Sarah Jane Brain Foundation
The Sarah Jane
Brain Foundation (SJBF) is a world-wide non-profit organization with a mission
to change the world for the millions of families who have a child or young
adult suffering from an acquired brain injury by advancing neuroscience and
implementing the PABI Plan. For more information about SJBF, please read
Patrick Donohue’s letter to his daughter and namesake of SJBF, Sarah Jane: www.TheBrainProject.org/lettertosarahjane.php.
About
CE Outcomes
CE Outcomes (CEOutcomes.com)
is a privately-held business to provide independent assessments of the impact
of medical education programming. It is a leading assessment company of healthcare
education and information that collaborates with over 100 healthcare
organizations in various sectors including pharmaceutical, biotech and device
companies, medical education and communication companies, managed care
organizations and government agencies to identify gaps and disparities in care,
develop strategic communication plans, and provide data on program
effectiveness.
Did Mindy McCready’s brain injury kill her?
There have been a lot of questions about country singer Mindy McCready’s substance abuse and its association with her recent suicide. But the question we should be asking is: “Did Mindy McCready’s brain injury kill her?
Many people know about Mindy’s violent relationship with the father of her oldest son, Billy McKnight. McKnight was arrested in 2005 on charges of attempted murder for beating and choking Mindy. Mindy suffered from seizures and she attributed her brain injury to the abuse by McKnight.
It seems as though every day there is another story about a man abusing his wife or girlfriend. But we rarely hear about the link between domestic violence and traumatic brain injury.
According to a 1999 study by Dr. Kathleen Monahan and Dr. Daniel O’Leary, more than 90 percent of all injuries secondary to domestic violence occur to the head, neck or face. Drs. Helene Jackson, Elizabeth Philip, et al., studied 53 women living in a domestic violence shelter in 1998 and found the women experienced five brain injuries in the prior year and almost 30 percent reported 10 injuries the prior year. In 2003, 99 battered women were studied by Dr. Eve Valera, who found 76 percent sustained at least one brain injury caused by their partner and 50 percent sustained multiple brain injuries.
There are many ways the victims of domestic violence can sustain a brain injury: a blow to the head with an object, pushed against a wall or any other solid surface, punched in the face or head, strenuous shaking of the body, falling and hitting their head, being strangled, near drowning or being shot in the face or head.
The Jackson Philip study conducted in three domestic violence shelters showed 92 percent had been hit in the head by their partners, most more than once; 83 percent had been both hit in the head and severely shaken; and 8 percent of them had been hit in the head more than 20 times in the past year.
The more often they had been abused, the more frequent were their symptoms and 40 percent reported a loss of consciousness. In a study of 46 victims of domestic violence conducted by Dr. John Corrigan and his colleagues, 67 percent had symptoms associated with traumatic brain injury and 30 percent reported loss of consciousness after a blow to the head.
These repeated brain injuries can lead to increased problems cognitively, physically and emotionally, which just exacerbates the vicious cycle of the violent relationship. These victims typically lack the knowledge about their brain injury so they do not seek services related to their injury. Also, the professional system to help victims of domestic violence is often unaware of the correlation between this crime and traumatic brain injury. By not linking the psychodynamic issues between the assault and their brain injury, professionals are not referring these victims to appropriate rehabilitation services.
Having one traumatic brain injury increases the likelihood of another TBI. Following just a single brain injury, a person’s reaction time may be slower, judgment may be off, and may be more impulsive and inattentive to prevent future brain injuries. Because of the nature of domestic violence, victims are susceptible to repeated injuries, which increase symptoms. These symptoms may include difficulty concentrating, confusion, difficulty making decisions and solving problems (which appears as poor judgment to the public), headaches, memory problems, depression and feeling overwhelmed.
And in a violent relationship the abuser is likely controlling the victim’s access to medical care or rehabilitation services as well not making the necessary adjustments those with brain injuries need. According to one study, “Pattern of Re-assault in Batterer Programs,” the recidivism rate among psychologically untreated batterers is almost 61 percent.
Domestic violence is the leading cause of injury to young women ages 15 to 44. The frequency of physical abuse within a relationship tends to increase and become more violent over time. More than 70 percent of women who sustain injuries due to domestic disputes are injured after they separate from their partner or spouse -- and one woman is beaten by her husband or partner every 15 seconds in the United States. About 95 percent of all victims of domestic violence are women, and approximately 50 percent of all homeless women and children in the United States fled from a domestic violence situation.
In a study conducted by Dr. Jonathan Silver and his colleagues, individuals with a history of traumatic brain injury have significantly higher occurrence for psychiatric disorders and suicide attempts in comparison with those without head injury. They also have a poorer quality of life.
Dr. Grahame Simpson and Dr. Robyn Tate studied 172 TBI survivors and 35 percent had clinically significant levels of hopelessness, 23 percent had suicidal thoughts, and 18 percent had made a suicide attempt post-injury.
There have been recent stories about the record number of military suicides last year. The 349 suicides among active-duty troops far exceeded the number of American combat deaths in Afghanistan and were up from 301 the year before. We know traumatic brain injury is the signature wound of the wars in Iraq and Afghanistan.
The story of Mindy McCready highlights how brain injury is one of the most important public health crises facing our nation, from victims of domestic violence, to our heroes in the military to our school children on the football and soccer fields sustaining concussions. Brain injury is the leading cause of death and disability for American youth and young adults and we need to act immediately.
The Sarah Jane Brain Foundation created the National Pediatric Acquired Brain Injury Plan (PABI Plan) which develops a seamless, standardized, evidence-based system of care that is universally accessible for the millions of children and young adults suffering from a brain injury. The PABI Plan would include many victims of domestic violence and most of the young veterans returning from war with a brain injury.
How many more Americans like Mindy McCready need to commit suicide before we take brain injury serious in this country?
Patrick B. Donohue, is founder of the The Sarah Jane Brain Foundation. For more, visit: www.TheBrainProject.org.
Will the Sandy Hook tragedy and the movie they want to do on mental illness in CT take away from the brain injury community?
My Name is Craig Sears I am a survivor of Traumatic Brain Injury (TBI) this event changed each and every single aspect of my life, being someone that lives with a brain injury my journey made me all-too familiar with the difficulties of individuals and families working through the arbitrary system of care. For years, I felt as though no one else knew what I was going through, but believe me Traumatic Brain Injury survivors almost ALWAYS experience the same things.
After suffering my injury in 1987, in the years that followed there was little knowledge on TBI in the medical field and even less in the public. As a result, my physical injuries were confused with intoxication or drug abuse and my brain injury misdiagnosed as mental illness. I was falsely arrested and institutionalized time and time again. My life turned into a constant tug of war. If it was not a mental institution it was a jail cell. Today more awareness has occurred, but there is still much to learn.
There have been many studies shown that brain injuries are NOT a mental illness. Well, then why do the states still continue to put it under that category? My thoughts would be because it’s an easy way out of not taking care of this bigger issue. TBI is separate and distinct from developmental and mental health diagnoses. Individuals with developmental disabilities and/or mental health issues may suffer a TBI. However, not all individuals with TBI have developmental or mental health issues. Finally, challenges and interventions implemented with survivors of TBI may be very different from those implemented with individuals with developmental disabilities, mental-health diagnoses and a dual-diagnosis of TBI and developmental disabilities and/or mental health issues.
You may ask; was the shooter identified as having a brain injury? No, the bigger picture is we are allowing the United States to walk all over the brain injury survivors and allowing them to say that the shooting that accord at Sandy Hook Elementary has to do with brain injury. You might also say there is not enough information about the shooter to make any diagnosis, and you might be right but at the end of the day they are still not the same! All of the talk of Asperger's Syndrome is misdirection... Asperger's Syndrome is not known to create violence (i.e., our prisons are not filled with kids with autism but they are filled with kids with brain injury). Everyone needs to wake up and realize the bigger picture. Or is this just another way for the United States/Connecticut to take advantage of us, “the brain injury survivors?”
It hasn’t even been a whole two months and they are already trying to put together a movie on mental illnesses with the mention of the Sandy Hook tragedy. People, can we let the families be at peace? Of course not, why would they? All they are worried about is making money and not worrying about what they are doing or putting the families through, look at the bigger picture.
We hear how brain injury and mental health are “alike”, well they are not and everyone needs to understand this. By putting these into the same category is not making things any better. I know many people who have either a mental illness or a traumatic brain injury and they are both two different topics. Again my point is on the bigger picture which is dealing with brain injury. The United States was handed a National Pediatric Acquired Brain Injury Plan on a silver platter that would help in situations such as this. (I.e. a traumatic brain injury is not a mental illness it is an injury, injuries require care, care we all need, care this plan can provide). The National PABI Plan Act of 2011 is bipartisan legislation that seeks to develop a seamless, standardized, evidence-based system of care that is universally accessible for the millions of families who have a child or young adult suffering the leading cause of death and disability for American youth and then transitioning into an adult system of greater independent living.
It always seems to amaze me how people can talk down to someone just because they are different and I’m constantly talked down. It’s bad enough trying to find anyone that knows anything about brain injury. I’ve been a participant in the Connecticut Acquired Brain Injury (ABI) Waiver Program for several years and I have YET to find anyone that I don’t need to tell what to do, or anyone that does not talk down to me like I’m a 2 year old, or even try to get one over on me! I have kept in this “box” where I’m very limited on what I can do. I believe that my rehabilitation has been curtailed as a result.
We all need to stop and take the time to really understand the difference between the two (mental health & brain injury) because they or NOT one in the same. They are two completely different situations and different disabilities.
My thoughts and prayers are with the families and communities impacted by this horrible... attack.
This movie is wrong on so many levels.
Craig Sears a Voice for Traumatic Brain Injury
After suffering my injury in 1987, in the years that followed there was little knowledge on TBI in the medical field and even less in the public. As a result, my physical injuries were confused with intoxication or drug abuse and my brain injury misdiagnosed as mental illness. I was falsely arrested and institutionalized time and time again. My life turned into a constant tug of war. If it was not a mental institution it was a jail cell. Today more awareness has occurred, but there is still much to learn.
There have been many studies shown that brain injuries are NOT a mental illness. Well, then why do the states still continue to put it under that category? My thoughts would be because it’s an easy way out of not taking care of this bigger issue. TBI is separate and distinct from developmental and mental health diagnoses. Individuals with developmental disabilities and/or mental health issues may suffer a TBI. However, not all individuals with TBI have developmental or mental health issues. Finally, challenges and interventions implemented with survivors of TBI may be very different from those implemented with individuals with developmental disabilities, mental-health diagnoses and a dual-diagnosis of TBI and developmental disabilities and/or mental health issues.
You may ask; was the shooter identified as having a brain injury? No, the bigger picture is we are allowing the United States to walk all over the brain injury survivors and allowing them to say that the shooting that accord at Sandy Hook Elementary has to do with brain injury. You might also say there is not enough information about the shooter to make any diagnosis, and you might be right but at the end of the day they are still not the same! All of the talk of Asperger's Syndrome is misdirection... Asperger's Syndrome is not known to create violence (i.e., our prisons are not filled with kids with autism but they are filled with kids with brain injury). Everyone needs to wake up and realize the bigger picture. Or is this just another way for the United States/Connecticut to take advantage of us, “the brain injury survivors?”
It hasn’t even been a whole two months and they are already trying to put together a movie on mental illnesses with the mention of the Sandy Hook tragedy. People, can we let the families be at peace? Of course not, why would they? All they are worried about is making money and not worrying about what they are doing or putting the families through, look at the bigger picture.
We hear how brain injury and mental health are “alike”, well they are not and everyone needs to understand this. By putting these into the same category is not making things any better. I know many people who have either a mental illness or a traumatic brain injury and they are both two different topics. Again my point is on the bigger picture which is dealing with brain injury. The United States was handed a National Pediatric Acquired Brain Injury Plan on a silver platter that would help in situations such as this. (I.e. a traumatic brain injury is not a mental illness it is an injury, injuries require care, care we all need, care this plan can provide). The National PABI Plan Act of 2011 is bipartisan legislation that seeks to develop a seamless, standardized, evidence-based system of care that is universally accessible for the millions of families who have a child or young adult suffering the leading cause of death and disability for American youth and then transitioning into an adult system of greater independent living.
It always seems to amaze me how people can talk down to someone just because they are different and I’m constantly talked down. It’s bad enough trying to find anyone that knows anything about brain injury. I’ve been a participant in the Connecticut Acquired Brain Injury (ABI) Waiver Program for several years and I have YET to find anyone that I don’t need to tell what to do, or anyone that does not talk down to me like I’m a 2 year old, or even try to get one over on me! I have kept in this “box” where I’m very limited on what I can do. I believe that my rehabilitation has been curtailed as a result.
We all need to stop and take the time to really understand the difference between the two (mental health & brain injury) because they or NOT one in the same. They are two completely different situations and different disabilities.
My thoughts and prayers are with the families and communities impacted by this horrible... attack.
This movie is wrong on so many levels.
Craig Sears a Voice for Traumatic Brain Injury
New York State PABI Plan meeting/reception/dinner at Columbia University Medical Center in NYC on Jan. 8, 2013
Had an amazing day at the New York State PABI Plan meeting/reception/dinner at Columbia University Medical Center in NYC on Jan. 8, 2013 with the Sarah Jane Brain Foundation! Met some amazing people. A big thank you to Paula Abdul & Patrick Kennedy who received the SJBF Lifetime Achievement for participating in our statewide meeting to organize the implementation of the National Pediatric Acquired Brain Injury Plan (PABI Plan) in New York State on January 8, 2013.
It was a full-day planning conference/reception/dinner on January 8, 2013, at Columbia University Medical Center in Manhattan. The meeting was about organizing the National Pediatric Acquired Brain Injury Plan (PABI Plan) and the $2.9 Billion, seven-year federal initiative in New York State. The PABI Plan’s mission is to develop a seamless, standardized, evidence-based system of care for the millions of American youth and their families suffering from the leading cause of death and disability from birth to 25 years of age, acquired brain injury.
The Sarah Jane Brain Foundation (SJBF) is a world-wide non-profit organization with a mission to change the world for the millions of families who have a child or young adult suffering from an acquired brain injury by advancing neuroscience and implementing the PABI Plan. For more information about SJBF, please read Patrick Donohue’s letter to his daughter and namesake of SJBF, Sarah Jane, when she turned five years old: www.TheBrainProject.org/lettertosarahjane.php.
Link to photos: https://plus.google.com/114123425016529532153/posts/RDeTmFw2BTU
Craig Sears - National Advisory Board Family Sarah Jane Brain Foundation
It was a full-day planning conference/reception/dinner on January 8, 2013, at Columbia University Medical Center in Manhattan. The meeting was about organizing the National Pediatric Acquired Brain Injury Plan (PABI Plan) and the $2.9 Billion, seven-year federal initiative in New York State. The PABI Plan’s mission is to develop a seamless, standardized, evidence-based system of care for the millions of American youth and their families suffering from the leading cause of death and disability from birth to 25 years of age, acquired brain injury.
The Sarah Jane Brain Foundation (SJBF) is a world-wide non-profit organization with a mission to change the world for the millions of families who have a child or young adult suffering from an acquired brain injury by advancing neuroscience and implementing the PABI Plan. For more information about SJBF, please read Patrick Donohue’s letter to his daughter and namesake of SJBF, Sarah Jane, when she turned five years old: www.TheBrainProject.org/lettertosarahjane.php.
Link to photos: https://plus.google.com/114123425016529532153/posts/RDeTmFw2BTU
Craig Sears - National Advisory Board Family Sarah Jane Brain Foundation
Will Sandy Hook get America to take brain injury seriously?
The Sarah Jane Brain Foundation
According to a 2008 CDC study, 82.8 percent of male prisoners in Minnesota reported having had one or more brain injury over the course of their lifetime. Marlena M. Wald and her colleagues found the causes ranged from assaults (37%), auto crashes (25%), sports-related (11%) to falls (11%). Another study showed that 87 percent of a county jail population had a history of brain injury (Slaughter, Facc & Ehde, 2003). This study also showed that many of these prisoners experience mental health problems such as severe depression and anxiety. Other studies have shown co-occurring problems such as alcohol and substance abuse, suicidal thoughts and attempts as well as significant anger management issues for this population.
In 1986, Dr. Dorothy Lewis and Dr. Jonathan Pincus published a study of 15 death row inmates and found every one of them had suffered severe brain injuries in childhood, about half were caused by assaults and six were chronically psychotic. Another study of 14 juveniles sentenced to death found all of them had suffered from a brain injury, most in auto crashes but assaults as well. Twelve had been brutally physically abused and five were sodomized by relatives.
We know where this tipping point begins. Over 765,000 American youth suffer a new brain injury every year, over 80,000 are hospitalized and over 11,000 die annually. Every 40 seconds another American family enters an Emergency Room with a new brain injury. And these are the ones who are actually identified, when two to three times are not identified. These numbers do not include the tens of thousands of non-traumatic acquired brain injuries such as meningitis which President Obama’s daughter had as an infant to strokes, brain tumors and seizure-disorders.
According to the CDC, brain injury is the #1 leading cause of death and disability for American youth with over 500,000 school-aged kids sustaining a brain injury each year, however, according to the federal Department of Education, there are less than 24,000 students nationwide receiving any additional support due to a brain injury. Our children are falling through the cracks and ending up on the streets, killing themselves, or even worse, killing innocent people and ending up on Death Row.
Here is the good news. There is a national plan to prevent, identify and treat these injuries. The National Pediatric Acquired Brain Injury Plan (PABI Plan) develops a seamless, standardized, evidence-based system of care that is universally accessible for the millions of American families. The PABI Plan also has broad-based, bi-partisan support with almost 150 co-sponsors of HR 2600 which will fund a $2.9 billion, seven-year national initiative. President Obama inspired a nation speaking to the Sandy Hook community on Sunday evening with these very moving words,
“We will be told that the causes of such violence are complex, and that is true. No single law, no set of laws can eliminate evil from the world or prevent every senseless act of violence in our society, but that can’t be an excuse for inaction. Surely we can do better than this. If there’s even one step we can take to save another child or another parent or another town from the grief that’s visited Tucson and Aurora and Oak Creek and Newtown and communities from Columbine to Blacksburg before that, then surely we have an obligation to try.”
There is a step we can take today! There is a law we can pass today that can have a significant impact immediately! If we don’t have the political will to implement the PABI Plan today, when will we? How many more children need to fall through the cracks? The children are waiting … The Sarah Jane Brain Foundation 101 West End Avenue • New York, NY 10023 (212) 576-1180 • www.thebrainproject.org
Written by Patrick B. Donohue, Founder, The Sarah Jane Brain Foundation, www.TheBrainProject.org
Craig Sears
According to a 2008 CDC study, 82.8 percent of male prisoners in Minnesota reported having had one or more brain injury over the course of their lifetime. Marlena M. Wald and her colleagues found the causes ranged from assaults (37%), auto crashes (25%), sports-related (11%) to falls (11%). Another study showed that 87 percent of a county jail population had a history of brain injury (Slaughter, Facc & Ehde, 2003). This study also showed that many of these prisoners experience mental health problems such as severe depression and anxiety. Other studies have shown co-occurring problems such as alcohol and substance abuse, suicidal thoughts and attempts as well as significant anger management issues for this population.
In 1986, Dr. Dorothy Lewis and Dr. Jonathan Pincus published a study of 15 death row inmates and found every one of them had suffered severe brain injuries in childhood, about half were caused by assaults and six were chronically psychotic. Another study of 14 juveniles sentenced to death found all of them had suffered from a brain injury, most in auto crashes but assaults as well. Twelve had been brutally physically abused and five were sodomized by relatives.
We know where this tipping point begins. Over 765,000 American youth suffer a new brain injury every year, over 80,000 are hospitalized and over 11,000 die annually. Every 40 seconds another American family enters an Emergency Room with a new brain injury. And these are the ones who are actually identified, when two to three times are not identified. These numbers do not include the tens of thousands of non-traumatic acquired brain injuries such as meningitis which President Obama’s daughter had as an infant to strokes, brain tumors and seizure-disorders.
According to the CDC, brain injury is the #1 leading cause of death and disability for American youth with over 500,000 school-aged kids sustaining a brain injury each year, however, according to the federal Department of Education, there are less than 24,000 students nationwide receiving any additional support due to a brain injury. Our children are falling through the cracks and ending up on the streets, killing themselves, or even worse, killing innocent people and ending up on Death Row.
Here is the good news. There is a national plan to prevent, identify and treat these injuries. The National Pediatric Acquired Brain Injury Plan (PABI Plan) develops a seamless, standardized, evidence-based system of care that is universally accessible for the millions of American families. The PABI Plan also has broad-based, bi-partisan support with almost 150 co-sponsors of HR 2600 which will fund a $2.9 billion, seven-year national initiative. President Obama inspired a nation speaking to the Sandy Hook community on Sunday evening with these very moving words,
“We will be told that the causes of such violence are complex, and that is true. No single law, no set of laws can eliminate evil from the world or prevent every senseless act of violence in our society, but that can’t be an excuse for inaction. Surely we can do better than this. If there’s even one step we can take to save another child or another parent or another town from the grief that’s visited Tucson and Aurora and Oak Creek and Newtown and communities from Columbine to Blacksburg before that, then surely we have an obligation to try.”
There is a step we can take today! There is a law we can pass today that can have a significant impact immediately! If we don’t have the political will to implement the PABI Plan today, when will we? How many more children need to fall through the cracks? The children are waiting … The Sarah Jane Brain Foundation 101 West End Avenue • New York, NY 10023 (212) 576-1180 • www.thebrainproject.org
Written by Patrick B. Donohue, Founder, The Sarah Jane Brain Foundation, www.TheBrainProject.org
Craig Sears
ABI Medicaid waiver - Annual Review Doctor’s Team Meeting Minutes
I am a survivor of Traumatic Brain Injury; In the early 1990's I became a member of Connecticut's class action lawsuit working along with the Connecticut Brain Injury Association advocating for Connecticut's Acquired Brain Injury/Traumatic Brain Injury (ABI) Medicaid Waiver.
As you may know I have had a lot of problems with the state o f Connecticut Department of Social Services (DSS) taking advantage of me. It has become very obvious they are also doing it to all others on the ABI wavier. Not only am I a survivor who cares enough to speak up but as a human being I feel I have an obligation to my fellow survivors to speak up and take charge of what is needed.
Because the doctors are not being made aware of Sec. 17b-260a-1J2c and Sec. 17b-260a-1G4 in the ABI waver laws the DSS is making them there “Genie Pigs“ and when it’s brought to light DSS does their best to deny or justify it! Department of Social Service is calling the doctors and telling them that their client’s hours are going to be cut, not being aware of these ‘Sec’ the doctors are singing off on the plain, which is allowing DSS to take advantage of the clients on the wavier.
Sec. 17b-260a-1J2c Responsibilities of the Department of Social Service, The DSS shall assign social work staff to execute the following ABI responsibilities: implement the approved service plan and coordinate services provided to the individual under the waiver.
Furthermore, the Department of Social Service has overstepped its authority; it is the interdisciplinary team that makes determinations about the service plan. This was done without an ABI Waiver team meeting, and in absence of me, my appointed advocate, and a neurophysiologist familiar with me.
Sec. 17b-260a-1G4 the service plan shall be developed by an interdisciplinary team that includes the individual, his or her conservator, if any, the Department of Social Service social worker assigned to coordinate the individual’s service plan, a neurophysiologist who is familiar with the individual, other clinical staff as needed, and any other person(s) of the individual’s choice.
Thank God That I made My Doctor aware of these Sec. :)
Below my ABI Doctor’s team meeting minutes are my staff’s team meeting minutes below that is the letter that I gave to the Connecticut TBI Advisory Committee on Oct 16 2012 My doctor wants to stay above the politics that’s why I am not posting his name
Subject: Dr Notes
Craig Sears’s team meeting 10/24/12
Attendees: Craig Sears, James Dwyer; Stephanie; Clement; Jessica; Dorian Long, and Doctor
Dwyer is requesting a recap of CS last three months CS notes that he has had speaking engagements during the last three months States that he gets calls and emails regarding advocacy on a regular basis It's difficult for CS to describe what he does to the current social worker due to an erosion of trust with this worker
Dwyer is attempting to state that he has not had specific events despite CS explaining to the contrary
Stephanie states that she is working with CS to complete a number of tasks Dorian introduces herself and asks about Stephanie's role on the team What activities he does on a monthly basis: despite details that he manages his blog, website, talk show for brain injury etc...
What specifically does Stephanie do with CS As his staff she provides companion and prevocational services
He does far more than go out to random events. They are conveniently taking advantage of the fact that he is to an accurate reporter
Sarah Jane Brain Project Advisory Board in State of CT
Can you take me through today how did you get through his day -question from Dorian Needs reminders to dress appropriately for weather and occasion States that he gets help with meal preparation from his staff States that he was able to get his oatmeal together in the morning
Being questioned regarding his ADL's ----it is crystal clear that he needs reminders
States that he knows that he would fail without his waiver services CS states that he does not want to go back to not having services
States that he likes structure. Does not believe that he could complete tasks if he did not have his ILST staff
State’s that it would be difficult if he were to have his services taken away. Dwyer states that he has benefitted and grown. Are these guys pushing to say he's made enough progress let's cut your hours? What a joke!
Dorian states that the ABI waiver program is over 42 million dollars in budget
There's an over focus on how his ILST services are implemented When are the ILST services delivered States that his hours in ILST are provided on a daily basis
ILST service hours:
Dwyer States that CS hours cannot be varied and haphazard States that there must be a schedule to implementing the hours It is their job to put structure in place regarding service intervention
Craig Sears
Everyone throws wrenches in his program because it doesn't fit the structure that he wants This is not an issue of improving his service but an attempt to scrutinize
CS is one of the highest functioning individuals on the waiver program per Dorian
My thoughts:
The lack of trust is so problematic He isn't going to be forthcoming in a meeting if he doesn't trust I will make sure that the level of structure is known to Mr. Dwyer
Points I made during the meeting
1. We discuss the service hours at every meeting. Dwyer denies this point
2. Trust on this program has eroded because all we do is discuss his hours
3. Dwyer called me and told me that his hours were going to be cut. I felt this was not a team process. Dwyer denies this point.
4. The focus on his hours leads to him not trusting. We go almost two months after a meeting trying to calm him down. If there is any waste it is the witch hunt that causes him not to trust and leads to months of lost service time.
5. Stated that I imagine that providers do not want to work with him because it's the same witch hunt at every meeting. Dorian stated that she resented my use of the phrase "witch hunt". I don't know how else to characterize what I've seen
6. The level of scrutiny exceeds anything I've ever seen
7. If I were not on his program I would not believe that this is happening. I would write him off as paranoid. I've seen it and it's horrible.
I explained that CS makes sure that he gets every hour out of his program. Of all people to question as to the veracity of their program CS should be the last person. He knows what hours he has and he wants the hours done.
What I did not say: it's a person-centered program. If he wants his hours implemented in a manner that is not traditional I can't see the problem with it. Why does the worker believe that there has to be a schedule that cannot be modified or a schedule that is demanded by DSS? That's not the program. It's not person-centered when it's convenient and then state driven when it's inconvenient. Completely unacceptable in my opinion!
New plan will be signed off in March 2013. The client will be reassessed 6 months afterwards
My thoughts: Connecticut Department of Social Service
Again doctor, thank you very much for being the first person to ever speak up for me on my case, helping make my case an example for others to follow. - CS
As you may know I have had a lot of problems with the state o f Connecticut Department of Social Services (DSS) taking advantage of me. It has become very obvious they are also doing it to all others on the ABI wavier. Not only am I a survivor who cares enough to speak up but as a human being I feel I have an obligation to my fellow survivors to speak up and take charge of what is needed.
Because the doctors are not being made aware of Sec. 17b-260a-1J2c and Sec. 17b-260a-1G4 in the ABI waver laws the DSS is making them there “Genie Pigs“ and when it’s brought to light DSS does their best to deny or justify it! Department of Social Service is calling the doctors and telling them that their client’s hours are going to be cut, not being aware of these ‘Sec’ the doctors are singing off on the plain, which is allowing DSS to take advantage of the clients on the wavier.
Sec. 17b-260a-1J2c Responsibilities of the Department of Social Service, The DSS shall assign social work staff to execute the following ABI responsibilities: implement the approved service plan and coordinate services provided to the individual under the waiver.
Furthermore, the Department of Social Service has overstepped its authority; it is the interdisciplinary team that makes determinations about the service plan. This was done without an ABI Waiver team meeting, and in absence of me, my appointed advocate, and a neurophysiologist familiar with me.
Sec. 17b-260a-1G4 the service plan shall be developed by an interdisciplinary team that includes the individual, his or her conservator, if any, the Department of Social Service social worker assigned to coordinate the individual’s service plan, a neurophysiologist who is familiar with the individual, other clinical staff as needed, and any other person(s) of the individual’s choice.
Thank God That I made My Doctor aware of these Sec. :)
Below my ABI Doctor’s team meeting minutes are my staff’s team meeting minutes below that is the letter that I gave to the Connecticut TBI Advisory Committee on Oct 16 2012 My doctor wants to stay above the politics that’s why I am not posting his name
Subject: Dr Notes
Craig Sears’s team meeting 10/24/12
Attendees: Craig Sears, James Dwyer; Stephanie; Clement; Jessica; Dorian Long, and Doctor
Dwyer is requesting a recap of CS last three months CS notes that he has had speaking engagements during the last three months States that he gets calls and emails regarding advocacy on a regular basis It's difficult for CS to describe what he does to the current social worker due to an erosion of trust with this worker
Dwyer is attempting to state that he has not had specific events despite CS explaining to the contrary
Stephanie states that she is working with CS to complete a number of tasks Dorian introduces herself and asks about Stephanie's role on the team What activities he does on a monthly basis: despite details that he manages his blog, website, talk show for brain injury etc...
What specifically does Stephanie do with CS As his staff she provides companion and prevocational services
He does far more than go out to random events. They are conveniently taking advantage of the fact that he is to an accurate reporter
Sarah Jane Brain Project Advisory Board in State of CT
Can you take me through today how did you get through his day -question from Dorian Needs reminders to dress appropriately for weather and occasion States that he gets help with meal preparation from his staff States that he was able to get his oatmeal together in the morning
Being questioned regarding his ADL's ----it is crystal clear that he needs reminders
States that he knows that he would fail without his waiver services CS states that he does not want to go back to not having services
States that he likes structure. Does not believe that he could complete tasks if he did not have his ILST staff
State’s that it would be difficult if he were to have his services taken away. Dwyer states that he has benefitted and grown. Are these guys pushing to say he's made enough progress let's cut your hours? What a joke!
Dorian states that the ABI waiver program is over 42 million dollars in budget
There's an over focus on how his ILST services are implemented When are the ILST services delivered States that his hours in ILST are provided on a daily basis
ILST service hours:
Dwyer States that CS hours cannot be varied and haphazard States that there must be a schedule to implementing the hours It is their job to put structure in place regarding service intervention
Craig Sears
Everyone throws wrenches in his program because it doesn't fit the structure that he wants This is not an issue of improving his service but an attempt to scrutinize
CS is one of the highest functioning individuals on the waiver program per Dorian
My thoughts:
The lack of trust is so problematic He isn't going to be forthcoming in a meeting if he doesn't trust I will make sure that the level of structure is known to Mr. Dwyer
Points I made during the meeting
1. We discuss the service hours at every meeting. Dwyer denies this point
2. Trust on this program has eroded because all we do is discuss his hours
3. Dwyer called me and told me that his hours were going to be cut. I felt this was not a team process. Dwyer denies this point.
4. The focus on his hours leads to him not trusting. We go almost two months after a meeting trying to calm him down. If there is any waste it is the witch hunt that causes him not to trust and leads to months of lost service time.
5. Stated that I imagine that providers do not want to work with him because it's the same witch hunt at every meeting. Dorian stated that she resented my use of the phrase "witch hunt". I don't know how else to characterize what I've seen
6. The level of scrutiny exceeds anything I've ever seen
7. If I were not on his program I would not believe that this is happening. I would write him off as paranoid. I've seen it and it's horrible.
I explained that CS makes sure that he gets every hour out of his program. Of all people to question as to the veracity of their program CS should be the last person. He knows what hours he has and he wants the hours done.
What I did not say: it's a person-centered program. If he wants his hours implemented in a manner that is not traditional I can't see the problem with it. Why does the worker believe that there has to be a schedule that cannot be modified or a schedule that is demanded by DSS? That's not the program. It's not person-centered when it's convenient and then state driven when it's inconvenient. Completely unacceptable in my opinion!
New plan will be signed off in March 2013. The client will be reassessed 6 months afterwards
My thoughts: Connecticut Department of Social Service
Again doctor, thank you very much for being the first person to ever speak up for me on my case, helping make my case an example for others to follow. - CS
ABI Medicaid waiver - Annual Review Staff Team Meeting Minutes
My name is Stephanie and I am part of Craig Sears CS’s staff. I work with him on his Prevocational hours and I have been working with CS since January of 2011, and I have been to every single one of his team meetings since then.
CS has an Annual Review State Team Meeting to evaluate his disability. On more than one occasion, Connecticut Department of Social Services continues to try to take his services away from him by cutting his hours back or trying to remove him from the program. Going into his team meeting was once again the same case as before. CS is told ever few months when he has his team meeting that his services will be changing, whether or not it’s his hours being cut or him being told that he will lose his services because he does not follow DSS protocol. As well as in between those months when CS does NOT have his team meetings he constantly gets calls from either his doctor (Dr. Tariq) or P&A (Jessica) stating that things are taking a turn, AGAIN! When CS confronted DSS at his team meeting about the fact that every meeting he has, it ends up reflecting upon his services, and what was brought to the table was something completely different. CS made a statement about how he received a call from his doctor stating that James Dwyer called him and told him that CS’s hours would be cut. When CS brought it to light in his team meeting Dorian Long, M.S.W., DSS (Program Administration Manager, Social Work Services) made it a point to tell CS that that’s NOT what was being asked of him. She told him that she was asking how he got himself up in the morning and who wakes him up, as well as a few other questions that I felt were unnecessary for the meeting.
I understand that CS has to report what he is doing when he is NOT at his team meetings, but when asking him questions like “who wakes him up in the morning” or “what he eats for breakfast” I feel that questions like that are irrelevant, Especially if it was stated prior that the meeting had nothing to do with that. Why does it matter HOW he gets up, as long as he’s up and going on with his daily activities. Now, I can understand if he was being asked, “So, CS what have you done outside of your meeting?” Then okay I can understand that because that pertains to his case and that’s what the meeting is about according to Dorian Long who stated “we are not speaking about your hours being cut, no one will be cutting them on you, this meeting is about what you’re doing to progress with the services you have.”
When CS addressed this matter to his doctor, Dr. Tariq made it very clear that it’s a constant tug of war. That every single time after his team meetings CS is told he will be losing parts of his services. Dr. Tariq made it known that, “yes, I did get a call from James Dwyer stating Dwyer would be lowering or cutting CS’s hours back.” Dwyer began to state he “NEVER” said any of that to the doctor. I cannot believe how Dwyer can turn around and basically call Dr. Tariq a “Liar” and state he never said those words. I honestly believe the one person who has been dealing with CS case for quite some time now wouldn’t make up a story like that, especially seeing how I was present when CS got the call from his doctor telling him all this. As well as the many emails he receives on a daily bases about his case. CS had made it very clear how he gets all emails from his service providers/staff about anything concerning his ABI waiver. But made it very known how DSS continues to go behind his back and contacting the service providers telling them what will be going on with CS’s case.
Dr Tariq deals with a lot of ABI waiver cases and with CS’s case he feels “it’s always like a witch hunt when it comes to CS’s case.” Dorian Long turned and looked at the doctor and made it a point to let him know she took offense to what the he had said. But how and why was that offensive to her? If it’s not about taking things away from CS then why would the doctor’s statement be offensive? I strongly agree with Dr. Tariq, he is right! CS does what he needs to do to follow all the “protocols” that are made. And for him to basically be threatened with taking his services or cutting his hours or whatever DSS tries to justify it at that time is uncalled for. CS has been an active and effective advocate for the brain injury survivor community and a participant in the Acquired Brain Injury (ABI) Waiver Program for several years. CS works very hard to make it known what he does by all his websites and blogs; along with the other meetings etc. he attends. Being able to be a voice for others is a way of him showing that he will NOT back down. That he will NOT allow anyone to go through what he had to because there were/are little to no services for brain injury survivor. He’s just an independent man trying to make a difference and better the services for brain injury.
Being a mother and having a family or any other parent for that matter, how do you expect us to teach our children to put their trust into a system when the system constantly takes advantage of the people who actually NEED the help? I think it’s a disgrace how DSS tries to justify their screw ups. After what they did to the doctor and everything they have done and the way they treat CS, I refuse to hold back any longer. It’s disgusting to know how people are treated when they have very little rights already……………
Sincerely,
Stephanie
My thoughts: Connecticut Department of Social Service ABI Waiver Program Provider's
CS has an Annual Review State Team Meeting to evaluate his disability. On more than one occasion, Connecticut Department of Social Services continues to try to take his services away from him by cutting his hours back or trying to remove him from the program. Going into his team meeting was once again the same case as before. CS is told ever few months when he has his team meeting that his services will be changing, whether or not it’s his hours being cut or him being told that he will lose his services because he does not follow DSS protocol. As well as in between those months when CS does NOT have his team meetings he constantly gets calls from either his doctor (Dr. Tariq) or P&A (Jessica) stating that things are taking a turn, AGAIN! When CS confronted DSS at his team meeting about the fact that every meeting he has, it ends up reflecting upon his services, and what was brought to the table was something completely different. CS made a statement about how he received a call from his doctor stating that James Dwyer called him and told him that CS’s hours would be cut. When CS brought it to light in his team meeting Dorian Long, M.S.W., DSS (Program Administration Manager, Social Work Services) made it a point to tell CS that that’s NOT what was being asked of him. She told him that she was asking how he got himself up in the morning and who wakes him up, as well as a few other questions that I felt were unnecessary for the meeting.
I understand that CS has to report what he is doing when he is NOT at his team meetings, but when asking him questions like “who wakes him up in the morning” or “what he eats for breakfast” I feel that questions like that are irrelevant, Especially if it was stated prior that the meeting had nothing to do with that. Why does it matter HOW he gets up, as long as he’s up and going on with his daily activities. Now, I can understand if he was being asked, “So, CS what have you done outside of your meeting?” Then okay I can understand that because that pertains to his case and that’s what the meeting is about according to Dorian Long who stated “we are not speaking about your hours being cut, no one will be cutting them on you, this meeting is about what you’re doing to progress with the services you have.”
When CS addressed this matter to his doctor, Dr. Tariq made it very clear that it’s a constant tug of war. That every single time after his team meetings CS is told he will be losing parts of his services. Dr. Tariq made it known that, “yes, I did get a call from James Dwyer stating Dwyer would be lowering or cutting CS’s hours back.” Dwyer began to state he “NEVER” said any of that to the doctor. I cannot believe how Dwyer can turn around and basically call Dr. Tariq a “Liar” and state he never said those words. I honestly believe the one person who has been dealing with CS case for quite some time now wouldn’t make up a story like that, especially seeing how I was present when CS got the call from his doctor telling him all this. As well as the many emails he receives on a daily bases about his case. CS had made it very clear how he gets all emails from his service providers/staff about anything concerning his ABI waiver. But made it very known how DSS continues to go behind his back and contacting the service providers telling them what will be going on with CS’s case.
Dr Tariq deals with a lot of ABI waiver cases and with CS’s case he feels “it’s always like a witch hunt when it comes to CS’s case.” Dorian Long turned and looked at the doctor and made it a point to let him know she took offense to what the he had said. But how and why was that offensive to her? If it’s not about taking things away from CS then why would the doctor’s statement be offensive? I strongly agree with Dr. Tariq, he is right! CS does what he needs to do to follow all the “protocols” that are made. And for him to basically be threatened with taking his services or cutting his hours or whatever DSS tries to justify it at that time is uncalled for. CS has been an active and effective advocate for the brain injury survivor community and a participant in the Acquired Brain Injury (ABI) Waiver Program for several years. CS works very hard to make it known what he does by all his websites and blogs; along with the other meetings etc. he attends. Being able to be a voice for others is a way of him showing that he will NOT back down. That he will NOT allow anyone to go through what he had to because there were/are little to no services for brain injury survivor. He’s just an independent man trying to make a difference and better the services for brain injury.
Being a mother and having a family or any other parent for that matter, how do you expect us to teach our children to put their trust into a system when the system constantly takes advantage of the people who actually NEED the help? I think it’s a disgrace how DSS tries to justify their screw ups. After what they did to the doctor and everything they have done and the way they treat CS, I refuse to hold back any longer. It’s disgusting to know how people are treated when they have very little rights already……………
Sincerely,
Stephanie
My thoughts: Connecticut Department of Social Service ABI Waiver Program Provider's
From The Connecticut TBI Advisory Committee
From Craig Sears,
Member
Survivor
To whom it may concern;
The Office of Protection and Advocacy for Persons with Disabilities provided me with the following, in her Fair Hearing statement.
We the brain injury survivor’s of CT need your help. Would you please pass these laws on to your communication network and encourage their participation? In efforts to help enforce these laws and to get the word out to all the ABI Medicaid Waiver Program Provider’s. There are so many ways in which this can help us all.
My Name is Craig Sears and I am a survivor of Traumatic Brain Injury. I have been an active and effective advocate for the brain injury survivor community and a participant in the Acquired Brain Injury (ABI) Waiver Program for several years in Connecticut. Prior to obtaining waiver services, and as a result of a lack of community based supports, I was imprisoned and institutionalized. It is my goal to continue to strive for independence with appropriate supports, and to continue my advocacy efforts for other survivors.
In the early 1990's I became a member of Connecticut's class action lawsuit working along with the Connecticut Brain Injury Association advocating for Connecticut's Acquired Brain Injury/Traumatic Brain Injury (ABI) Medicaid Waiver.
I am an independent man with a brain injury. I have been an active and effective advocate for the brain injury survivor community and a participant in the Acquired Brain Injury (ABI) Waiver Program for several years. Prior to obtaining waiver services, and as a result of a lack of community based supports, I was imprisoned and institutionalized. It is my goal to continue to strive for independence with appropriate supports, and to continue my advocacy efforts for other survivors. With these goals in mind my ABI Waiver Service plan was developed in a truly person-centered cooperative team approach. My specific needs and goals were addressed through the design of a unique employment support program, and structured services that address my needs.
After an annual review, my current ABI Waiver service plan was approved, dated to commence May of 2009, and was signed by two Department of Social Service (DSS) social workers, who at the time were Carolyn Wright, my former social worker, and Victor Estay, my current social worker, and social work supervisor, Gary Vertula. I recently issued to DSS a complaint about an approved ABI Waiver provider that was not meeting my needs. The provider as well as I agreed to part ways, leaving me without services. This service lapse should have been temporary; however, through time delays and a refusal to authorize both service provision and payment to an approved provider selected by myself, DSS has essentially suspended all of my ABI Waiver services without a formal notice, and without good cause. Despite having a current service plan that was approved by DSS, I was without any services since August 29, 2009.
Sec. 17b-260a-1I, Individuals who are eligible for ABI services shall be given free choice of all qualified providers of each service included in his or her plan of care. When I exercised this right to choice, DSS refused to authorize service provision and payment to an alternate DSS/ Allied approved provider of his choice, resulting in a complete absence of services for Mr. Sears. Sec. 17b-260a-1J7 states that it is the responsibility of the Department to pay for approved ABI waiver services delivered by qualified providers through its fiduciary agent on behalf of the individual.
While the Department of Social Service may argue that a review of my service plan is necessary, additional evaluations are requested, etc., it cannot hold my services in suspense while these decisions are made by my team. I had a current DSS approved ABI Waiver service plan. The Department of Social Service has a responsibility and an obligation to provide me with these services until such time as any changes are made to my plan.
Sec. 17b-260a-1J2c Responsibilities of the Department of Social Service, The DSS shall assign social work staff to execute the following ABI responsibilities: implement the approved service plan and coordinate services provided to the individual under the waiver. Furthermore, the Department of Social Service has overstepped its authority; it is the interdisciplinary team that makes determinations about the service plan. This was done without an ABI Waiver team meeting, and in absence of me, my appointed advocate, and a neurophysiologist familiar with me. Sec. 17b-260a-1G4 the service plan shall be developed by an interdisciplinary team that includes the individual, his or her conservator, if any, the Department of Social Service social worker assigned to coordinate the individual’s service plan, a neurophysiologist who is familiar with the individual, other clinical staff as needed, and any other person(s) of the individual’s choice.
I requested the immediate re-instatement of my ABI Waiver plan, as written. By withholding both the authorization to provide services and payment, to an authorized provider, DSS has placed me at risk of re-institutionalization, has halted my means of financial self-support, has left me without the ability to meet my own basic needs, and has neglected to support me in the least restricted environment available and stricted environment available.
2012 was no different; during the months of June or July I have an Annual Review State Team Meeting to evaluate my disability. On more than one occasion, Connecticut Department of Social Services continues to try to take my services away from me by cutting my hours back or trying to remove me from the program. As well as threatening me and stating that I am not compliant with the program because I won’t allow them in my residences. According to Dr. T. M. A., PhD., M. S., MBA clients on the ABI Waiver are not required to allow DSS to do home visits; if the client refuses a home visit that's fine. There are no consequences for not allowing a home visit.
Each year the Department of Social Service makes me sign a blank waiver agreement page without a completed service plan attached. According to Dr. T. M. A., PhD., M. S., MBA, One, it's unethical; especially when the worker has threatened to unilaterally change the plan without client’s involvement. Two, the Department of Social Service is billing clients for a co pay that is not documented in the plan. They are saying that clients sign off and understand the terms but they don't review the document. A month before my team meeting I received a call from my ABI Medicaid Waiver doctor, who had previously received a call from J.D at Bridgeport Department of Social Service, (who mind you is a supervisor) explaining to me my services were going to be lowered, and that DSS was going to try and use my program against me; all because I will ‘NOT’ allow them into my residence. This is the way they are getting the doctors to sign off on it and allowing them to take advantage. I had to have the Office of Protection and Advocacy for Persons with Disabilities at my team meeting like I have had to do in the past years, because my services are always being threatened.
Two weeks after my Annual Review State team meeting, I had to call Allied Community Resources because I had been trying to get a hold of the Department of Social Services to try and get a copy of my ABI wavier plan and I was not getting any reply back from DSS. Come to find out that there actually were changes made to my plan. Without me/ABI team knowing anything about it!
This was done without an ABI Waiver team meeting, and in absence of me, my appointed advocate, and a neurophysiologist familiar with me.
Only after sending out an email and calling the “Office of Protection and Advocacy for Persons with Disabilities” and my ABI waiver Dr. about this, saying that I did not agree to that change in my plan, attaching the Department of Social Service and Sec. 17b-260a-1G4 on the email.
Only then the Department of Social Service called me saying that they were going to send me a new ABI Waiver service plan to sign saying DSS is changing it back to the way it was, without any changes.
The ABI Waiver program is a federal program. The states are program providers for the government. Most requirements the state try to impose on us are NOT mandated in the plan.
When it’s brought to light they do their best to justify it!!
Fortunately I am a strong advocate for myself and after many phone calls, including to my Congressman’s office, I was able to have them reinstate my services – but not without cost to me as I went for so long without getting the services I needed. It also brought to my attention the sad state of the system as it currently exists – it is designed to take advantage of people with disabilities. Another person with a TBI in my shoes would likely not have had the ability to advocate for themselves as I did, and without services they would not have anybody else willing to do it on their behalf. This is a very disturbing situation and it shows how easy it is for the state of Connecticut Department of Social Service to take advantage of someone like me.
Why aren’t these laws being enforced?
Why is it that ABI Medicaid Waiver Program Provider’s don’t know about these laws?
http://www.ct.gov/dss/cwp/view.asp?a=2353&q=316512
To all U.S States with ABI Medicaid waiver Services what have you done to ensure that the same thing is NOT happening in your state?
Survivor
To whom it may concern;
The Office of Protection and Advocacy for Persons with Disabilities provided me with the following, in her Fair Hearing statement.
We the brain injury survivor’s of CT need your help. Would you please pass these laws on to your communication network and encourage their participation? In efforts to help enforce these laws and to get the word out to all the ABI Medicaid Waiver Program Provider’s. There are so many ways in which this can help us all.
My Name is Craig Sears and I am a survivor of Traumatic Brain Injury. I have been an active and effective advocate for the brain injury survivor community and a participant in the Acquired Brain Injury (ABI) Waiver Program for several years in Connecticut. Prior to obtaining waiver services, and as a result of a lack of community based supports, I was imprisoned and institutionalized. It is my goal to continue to strive for independence with appropriate supports, and to continue my advocacy efforts for other survivors.
In the early 1990's I became a member of Connecticut's class action lawsuit working along with the Connecticut Brain Injury Association advocating for Connecticut's Acquired Brain Injury/Traumatic Brain Injury (ABI) Medicaid Waiver.
I am an independent man with a brain injury. I have been an active and effective advocate for the brain injury survivor community and a participant in the Acquired Brain Injury (ABI) Waiver Program for several years. Prior to obtaining waiver services, and as a result of a lack of community based supports, I was imprisoned and institutionalized. It is my goal to continue to strive for independence with appropriate supports, and to continue my advocacy efforts for other survivors. With these goals in mind my ABI Waiver Service plan was developed in a truly person-centered cooperative team approach. My specific needs and goals were addressed through the design of a unique employment support program, and structured services that address my needs.
After an annual review, my current ABI Waiver service plan was approved, dated to commence May of 2009, and was signed by two Department of Social Service (DSS) social workers, who at the time were Carolyn Wright, my former social worker, and Victor Estay, my current social worker, and social work supervisor, Gary Vertula. I recently issued to DSS a complaint about an approved ABI Waiver provider that was not meeting my needs. The provider as well as I agreed to part ways, leaving me without services. This service lapse should have been temporary; however, through time delays and a refusal to authorize both service provision and payment to an approved provider selected by myself, DSS has essentially suspended all of my ABI Waiver services without a formal notice, and without good cause. Despite having a current service plan that was approved by DSS, I was without any services since August 29, 2009.
Sec. 17b-260a-1I, Individuals who are eligible for ABI services shall be given free choice of all qualified providers of each service included in his or her plan of care. When I exercised this right to choice, DSS refused to authorize service provision and payment to an alternate DSS/ Allied approved provider of his choice, resulting in a complete absence of services for Mr. Sears. Sec. 17b-260a-1J7 states that it is the responsibility of the Department to pay for approved ABI waiver services delivered by qualified providers through its fiduciary agent on behalf of the individual.
While the Department of Social Service may argue that a review of my service plan is necessary, additional evaluations are requested, etc., it cannot hold my services in suspense while these decisions are made by my team. I had a current DSS approved ABI Waiver service plan. The Department of Social Service has a responsibility and an obligation to provide me with these services until such time as any changes are made to my plan.
Sec. 17b-260a-1J2c Responsibilities of the Department of Social Service, The DSS shall assign social work staff to execute the following ABI responsibilities: implement the approved service plan and coordinate services provided to the individual under the waiver. Furthermore, the Department of Social Service has overstepped its authority; it is the interdisciplinary team that makes determinations about the service plan. This was done without an ABI Waiver team meeting, and in absence of me, my appointed advocate, and a neurophysiologist familiar with me. Sec. 17b-260a-1G4 the service plan shall be developed by an interdisciplinary team that includes the individual, his or her conservator, if any, the Department of Social Service social worker assigned to coordinate the individual’s service plan, a neurophysiologist who is familiar with the individual, other clinical staff as needed, and any other person(s) of the individual’s choice.
I requested the immediate re-instatement of my ABI Waiver plan, as written. By withholding both the authorization to provide services and payment, to an authorized provider, DSS has placed me at risk of re-institutionalization, has halted my means of financial self-support, has left me without the ability to meet my own basic needs, and has neglected to support me in the least restricted environment available and stricted environment available.
2012 was no different; during the months of June or July I have an Annual Review State Team Meeting to evaluate my disability. On more than one occasion, Connecticut Department of Social Services continues to try to take my services away from me by cutting my hours back or trying to remove me from the program. As well as threatening me and stating that I am not compliant with the program because I won’t allow them in my residences. According to Dr. T. M. A., PhD., M. S., MBA clients on the ABI Waiver are not required to allow DSS to do home visits; if the client refuses a home visit that's fine. There are no consequences for not allowing a home visit.
Each year the Department of Social Service makes me sign a blank waiver agreement page without a completed service plan attached. According to Dr. T. M. A., PhD., M. S., MBA, One, it's unethical; especially when the worker has threatened to unilaterally change the plan without client’s involvement. Two, the Department of Social Service is billing clients for a co pay that is not documented in the plan. They are saying that clients sign off and understand the terms but they don't review the document. A month before my team meeting I received a call from my ABI Medicaid Waiver doctor, who had previously received a call from J.D at Bridgeport Department of Social Service, (who mind you is a supervisor) explaining to me my services were going to be lowered, and that DSS was going to try and use my program against me; all because I will ‘NOT’ allow them into my residence. This is the way they are getting the doctors to sign off on it and allowing them to take advantage. I had to have the Office of Protection and Advocacy for Persons with Disabilities at my team meeting like I have had to do in the past years, because my services are always being threatened.
Two weeks after my Annual Review State team meeting, I had to call Allied Community Resources because I had been trying to get a hold of the Department of Social Services to try and get a copy of my ABI wavier plan and I was not getting any reply back from DSS. Come to find out that there actually were changes made to my plan. Without me/ABI team knowing anything about it!
This was done without an ABI Waiver team meeting, and in absence of me, my appointed advocate, and a neurophysiologist familiar with me.
Only after sending out an email and calling the “Office of Protection and Advocacy for Persons with Disabilities” and my ABI waiver Dr. about this, saying that I did not agree to that change in my plan, attaching the Department of Social Service and Sec. 17b-260a-1G4 on the email.
Only then the Department of Social Service called me saying that they were going to send me a new ABI Waiver service plan to sign saying DSS is changing it back to the way it was, without any changes.
The ABI Waiver program is a federal program. The states are program providers for the government. Most requirements the state try to impose on us are NOT mandated in the plan.
When it’s brought to light they do their best to justify it!!
Fortunately I am a strong advocate for myself and after many phone calls, including to my Congressman’s office, I was able to have them reinstate my services – but not without cost to me as I went for so long without getting the services I needed. It also brought to my attention the sad state of the system as it currently exists – it is designed to take advantage of people with disabilities. Another person with a TBI in my shoes would likely not have had the ability to advocate for themselves as I did, and without services they would not have anybody else willing to do it on their behalf. This is a very disturbing situation and it shows how easy it is for the state of Connecticut Department of Social Service to take advantage of someone like me.
Why aren’t these laws being enforced?
Why is it that ABI Medicaid Waiver Program Provider’s don’t know about these laws?
http://www.ct.gov/dss/cwp/view.asp?a=2353&q=316512
To all U.S States with ABI Medicaid waiver Services what have you done to ensure that the same thing is NOT happening in your state?
WE NEED YOUR HELP! Please Call Your Representative TODAY to Make Sure This Law Passes. H.R. 2600: National Pediatric Acquired Brain Injury Plan
In less than three weeks Congress will meet to vote on the PABI Plan. The PABI Plan would create a seamless, standardized, evidence-based system of care for the millions of American families suffering from the number one
leading cause of death and disability in America’s youth: Pediatric Acquired Brain Injury.
(If you’re not sure who your Congress person is please email your name, City, State to: ted@thebrainproject.org for contact information)
About the PABI Plan:
http://www.thebrainproject.org/pabihome.php
Message to leave in voicemail (or if the receptionist insists on taking the message, please make sure they repeat it back to you so you know they wrote it down correctly):
"(Legislative Assistant’s name), my name is (your name) and I am (insert position/organization or hometown). I wanted to thank Representative (Insert Name) for considering to serve as a co-sponsor of HR 2600, the National Pediatric Acquired Brain Injury Plan Act. As you know, over 130 bi-partisan Members of Congress have signed on as co-sponsors of HR 2600 and we would greatly appreciate Congress (man/woman) (Insert Name)’s continued support of the millions of American families who have a child with a brain injury. If you need to contact me, please feel free to call me at (your phone number)."
Email to send after VM (please cc ted@thebrainproject.org): “Per my voicemail, my name is (your name) and I live in (your hometown). I would greatly appreciate if Representative (Insert Name) would agree to co-sponsor HR 2600, The National Pediatric Acquired Brain Injury Plan Act, which would create a seamless, standardized, evidence-based system of care for the millions of American families suffering from the number one leading cause of death and disability in America’s youth: Pediatric Acquired Brain Injury.
Thanks very much for your support and that of congress (man/woman) (Insert Name), and please do not hesitate to contact me with any questions.
If the receptionist asks what it is regarding, tell them it is about HR 2600, The National PABI Plan Act as they are aware of the bill.
Thank you, Craig Sears
(If you’re not sure who your Congress person is please email your name, City, State to: ted@thebrainproject.org for contact information)
About the PABI Plan:
http://www.thebrainproject.org/pabihome.php
Message to leave in voicemail (or if the receptionist insists on taking the message, please make sure they repeat it back to you so you know they wrote it down correctly):
"(Legislative Assistant’s name), my name is (your name) and I am (insert position/organization or hometown). I wanted to thank Representative (Insert Name) for considering to serve as a co-sponsor of HR 2600, the National Pediatric Acquired Brain Injury Plan Act. As you know, over 130 bi-partisan Members of Congress have signed on as co-sponsors of HR 2600 and we would greatly appreciate Congress (man/woman) (Insert Name)’s continued support of the millions of American families who have a child with a brain injury. If you need to contact me, please feel free to call me at (your phone number)."
Email to send after VM (please cc ted@thebrainproject.org): “Per my voicemail, my name is (your name) and I live in (your hometown). I would greatly appreciate if Representative (Insert Name) would agree to co-sponsor HR 2600, The National Pediatric Acquired Brain Injury Plan Act, which would create a seamless, standardized, evidence-based system of care for the millions of American families suffering from the number one leading cause of death and disability in America’s youth: Pediatric Acquired Brain Injury.
Thanks very much for your support and that of congress (man/woman) (Insert Name), and please do not hesitate to contact me with any questions.
If the receptionist asks what it is regarding, tell them it is about HR 2600, The National PABI Plan Act as they are aware of the bill.
Thank you, Craig Sears
Sarah Jane Brain Foundation to Work with WebMD to Develop a Virtual Center of Excellence
Online Ecosystem for #1 Cause of Death and Disability for American Youth
New York, NY – The Sarah Jane Brain Foundation (SJBF) announced that WebMD will play an advisory role in developing the SJBF Virtual Center of Excellence. The Virtual Center is a central component of the National Pediatric Acquired Brain Injury Plan (PABI Plan) which establishes a seamless, standardized, evidence-based system of care that is universally accessible for the millions of American families with a child or young adult suffering from the leading cause of death and disability for American youth, brain injury. WebMD’s Medical Education subsidiary, Medscape Education, assisted SJBF and its International Advisory Board with updating the PABI Plan.
The Virtual Center will function as a centralized, online ecosystem created for the pediatric acquired brain injury (PABI) community of families, health and education providers, and researchers. According to the PABI Plan, “Data management, communications, outcomes measures, and education are some of the technologies required to advance the continuum of care for those with PABI and their families, with the potential to help millions in need.”
Patrick Donohue, Founder of The Sarah Jane Brain Foundation, said, “In order to leverage the full power of technology, we reached out to the leading industry experts to assist us and WebMD agreed to advise us regarding the technology required to help us change the world for Sarah Jane and the millions of our families that have a child with a brain injury. We are enormously grateful for their wisdom and guidance.” Patrick Donohue is the father of Sarah Jane Donohue who turned seven years old today and is the namesake of the Sarah Jane Brain Foundation.
“WebMD and Medscape Education are excited to partner with The Sarah Jane Brain Foundation in creating comprehensive educational resources on pediatric acquired brain injuries for patients, health care providers and educators,” said Dr. Steven Zatz, Executive Vice President, WebMD Professional Services. “The freely-accessible online resources and community will empower collaboration amongst patient families, care providers and researchers, and track outcomes over time.”
In order to view the updated National Pediatric Acquired Brain Injury Plan (PABI Plan), please visit www.TheBrainProject.org.
About The Sarah Jane Brain Foundation The Sarah Jane Brain Foundation (SJBF) is a world-wide non-profit organization with a mission to change the world for the millions of families who have a child or young adult suffering from an acquired brain injury by advancing neuroscience and implementing the PABI Plan. For more information about SJBF, please read Patrick Donohue’s letter to his daughter and namesake of SJBF, Sarah Jane, when she turned five years old: www.TheBrainProject.org/lettertosarahjane.php.
Craig Sears
The Sarah Jane Brain Foundation
1501 Broadway - Suite 12099
New York, NY 10036
212.576.1180
craig@thebrainproject.org
www.TheBrainProject.org
“WebMD and Medscape Education are excited to partner with The Sarah Jane Brain Foundation in creating comprehensive educational resources on pediatric acquired brain injuries for patients, health care providers and educators,” said Dr. Steven Zatz, Executive Vice President, WebMD Professional Services. “The freely-accessible online resources and community will empower collaboration amongst patient families, care providers and researchers, and track outcomes over time.”
In order to view the updated National Pediatric Acquired Brain Injury Plan (PABI Plan), please visit www.TheBrainProject.org.
About The Sarah Jane Brain Foundation The Sarah Jane Brain Foundation (SJBF) is a world-wide non-profit organization with a mission to change the world for the millions of families who have a child or young adult suffering from an acquired brain injury by advancing neuroscience and implementing the PABI Plan. For more information about SJBF, please read Patrick Donohue’s letter to his daughter and namesake of SJBF, Sarah Jane, when she turned five years old: www.TheBrainProject.org/lettertosarahjane.php.
Craig Sears
The Sarah Jane Brain Foundation
1501 Broadway - Suite 12099
New York, NY 10036
212.576.1180
craig@thebrainproject.org
www.TheBrainProject.org
H.R. 2600: National Pediatric Acquired Brain Injury Plan
March 25, 2012
To Whom It May Concern.
My name is Craig Sears, and I am a Survivor of a Traumatic Brain Injury.
I am writing on behalf of the Sarah Jane Brain Foundation, and I am adding my support as a Traumatic Brain Injury advocate to their goal of creating a national model care system for children suffering from all Pediatric Acquired Brain Injuries (PABI). This program is sorely needed, and it will help thousands of children and their families overcome the difficulties following a Traumatic Brain Injury (TBI). It will also help raise awareness of TBI and help the thousands of other American adults who yearly suffer a TBI as result of accidents, falls, strokes, or by other means. And it will help protect the children of tomorrow from ever having to experience the horror and heartache of TBI. This coupled with the growing awareness that thousands of our troops returning from Iraq and Afghanistan too are suffering from TBI -- this injury is being called the signature wound of these conflicts. This is my Story:
My advocacy started as means to overcome my own difficulties. It's become my mission to make sure that no one else has to go through what I have.
It was July 9th, 1987, and it was a beautiful Connecticut summer afternoon. I was out driving my motorcycle. I had just turned 20 years old and I had a lot going for me. I was making a very good life for myself. I had a great family. I had a good job in construction and also as a part time mechanic. I was making good money for a kid my age. I had a great social life, lots of friends, and I was very popular. I had a great girlfriend. I had 2 cars, a motorcycle, and lived in a nice condo right on the water. I was living the American Dream. Life was great.
And in a heartbeat, it was all gone. Suddenly, I came up over a hill, and there was a car going the wrong way. It was too late. I couldn't stop and we collided. I was thrown nearly 40 feet over on-coming traffic. I landed head first into a curb.
I have no memory of the next 6 months. That period of time is a Black Hole in my life. I was in and out of a coma, undergoing multiple surgeries. The doctors operated on my head, and did what they could to patch up my body. This was the beginning of my physical recovery.
Though my body was healing, a bigger problem went untreated. And no one realized it. Insult was added to injury. This is where I fell through the cracks. Despite having my head in a cast, no one identified the true nature of my injury me as being a Traumatic Brain Injury (TBI). That oversight would cost me dearly in the years to come. I had no idea of the hell I was in for. Had I known what lay ahead, I would never have fought so damn hard to make it. I would have given up, lay down and died.
My struggles were constant. I had to relearn everything, How to walk, how to talk, how to eat, how to use the bathroom. How to care for myself, and then there was the incessant pain, the physical pain of my body overcoming weakness and injury. Worse yet there was the anguish of not knowing who I was.
Things went from bad to worse. Soon, the treatment center I was in transferred me to a mental health ward. I spent the next nine months locked in against my will, slowly regaining my memory, and a growing sense that this type of life wasn't for me.
I was angry. I wanted out. I began calling out to anyone who would listen to me Town officials, State Government, anyone who could get me out. While I knew I didn't need to be there, I did know that I needed help in other areas. But the help I needed wasn't available. This was not a mental health issue.
Eventually, a sympathetic ear at the Connecticut Governor's office helped arrange a meeting between my family, my doctors, and a state representative. I told them all, I wanted out, I needed out.
And it was clear to them that I was right. But where was I to go?
I had only one real option, and that was my family. Yet I didn't want to be a burden to my parents. I applied for Section 8 disability housing, and was put on a waiting list. I was turned down repeatedly.
So in the meantime, my family helped me get into my own one room efficiency apartment. While a big step up from the psychiatric ward, this too, was far from ideal. I now found myself living alone, except for the roaches and rats, and vulnerable, in an area known for drug dealers and prostitutes.
I wandered those mean streets, trying to regain some kind of memory. I would watch other people to see what they were doing, how they were acting in order to regain anything that I knew how to do before the accident. All I could figure out at this time was that this was not who I was.
With time and my family’s help, things began to improve for me. My mother got me a weight set, my father bought me a bicycle and I started volunteering at a local hospital. That gave me access to their physical therapy rooms. I'd learn what they were doing for rehabilitation and go back home at night to do the exercises on my own in order to regain my strength and abilities. But without any medical oversight, I'd over do it. I hurt myself repeatedly. Many times, my mother took me to the hospital because I hurt so bad that I couldn't walk or move.
Socially, things were awkward. One day after volunteering, I was leaving the hospital. I saw a woman fall to the floor. My instincts were to grab a wheelchair, put her in it and run her into the emergency room. I thought I was doing the right thing. But in reality, my actions upset the emergency room staff, and the next day, the hospital asked me not to return. I was crushed.
One of the lasting consequences of my TBI was that I would slur my words when I spoke. And my balance would be off when I walked. Instead of realizing that this is how I am, people just assumed that I was drinking or using drugs. No one would take me seriously.
It became harder and harder to find where I fit in. With the help of my family, I moved into and out of different apartments. But the pieces of mind and my life didn't fit quite right. I was restless, and depressed. I struggled to cope. I turned to what I had seen so many others do on the streets: alcohol and drugs. I had learned the wrong way to deal with my problems. I thought it would help me forget all that I had gone through.
Everything I had long fought for, I now started to lose. It was all slipping away. I found myself alone and getting into trouble more often, ending up in shelters, local lockups, and numerous mental health facilities all over the state. I continued to spiral down, and soon I wound up homeless, and not long after that, in prison.
I had several brushes with the law. While I struggled daily to live with my brain injury, I ended up with several minor arrests for public urination and things of that sort. The state of Connecticut did find a way to use my injury against me. It was a probation violation, for which I would ultimately receive a five-year prison term. I spent five years locked up in a level-four high-security prison where I received absolutely no help for my disabilities. I was locked in an 8'x 10' cell twenty-four hours a day surrounded by gang members, rapists, killers, and child molesters. All for peeing in a garage, does that sound like justice to you?
The police, the court, the judge and the law, didn't know, care, or consider my TBI. And once behind bars, neither did the warden. I served five-years for what other people would sleep off overnight in the local lock-up, and then clear up with a brief court appearance. Again, there were no programs, no early release, or time off for good behavior. TBI or not, I served every measure of that sentence to the fullest. Common courtesy prevents me from sharing here. It was hell.
Somehow, I survived to be released in 2003. Life though continues to be a struggle. I have no friends. I have no money. I have few options, and fewer choices. I am very uncertain of my future. I still want the American Dream, but it feels further away than ever. I want to be hopeful, but I know all too well how quickly good can go bad in life. But I try my best to help those with Traumatic Brain Injury (TBI) get the help we need, and to avoid the mistakes, and missteps I made.
In the 1990's I became a member of Connecticut's class action lawsuit working along with the Connecticut Brain Injury Association advocating for Connecticut's Acquired Brain Injury/Traumatic Brain Injury (ABI/TBI) Medicaid Waiver, implemented in 1999. This waiver allows the state to permit organizations to provide non-medical services to people with TBI enabling them to live in the community outside of nursing homes and institutions.
While in prison, I learned that I was part of a class action lawsuit that resulted in the implementation of Connecticut’s ABI/TBI Medicaid Waiver Program. I immediately requested that I be provided a program upon my release from prison! Thank God My mother was able to get me into a program after 16 years of being thrown into this deplorable life of hell!
During and after the program, I needed to find a place to call home, after 18 years of waiting and being turned down; I turned to a local Congressman's office for help, Former Congressman Christopher Shays. Within 2 months, they cut through the red tape, and I finally received recognition of my TBI. And I was accepted into a HUD subsidized housing unit.
(Fact) - The US says we have rights; but the State's trample all over them as if they are immune to our constitutional rights.
Due to my injury I have memory problems, speech problems, balance issues and many other things. I am disabled because of this and receive services from the state, which enable me to remain in the community instead of in a nursing home, in prison or on the streets. However, the State of Connecticut wrongly took away those services, for no reason and without notice.
I have been an active and effective advocate for the brain injury survivor community and a participant in the Acquired Brain Injury (ABI) Waiver Program for several years. Prior to obtaining waiver services, and as a result of a lack of community-based supports, I was imprisoned and institutionalized. It is my goal to continue to strive for independence with appropriate supports, and to continue my advocacy efforts for other survivors. With these goals in mind my ABI Waiver Service plan was developed in a truly person-centered cooperative team approach. My specific needs and goals were addressed through the design of a unique employment support program, and structured services that address my needs.
(I'm damned if I do and I'm damned if I don't.) – From my Fair Hearing Statement
After an annual review, of my current ABI Waiver service plan was approved, dated to commence May of 2009, and was signed by two Department of Social Services (herein referred to as the Department) social workers, Carolyn Wright, my former social worker, and Victor Estay, my current social worker, and social work supervisor, Gary Vertula. I had recently issued to the Department a complaint about an approved ABI Waiver provider that was not meeting my needs. The provider and I agreed to part ways, leaving me without services. This service lapse should have been temporary; however, through time delays and a refusal to authorize both service provision and payment to an approved provider selected by me, the Department has essentially suspended all of my ABI Waiver services without a formal notice, and without cause. Despite having a current service plan that was approved by the Department, I have been without any services since August 29, 2009.
Sec. 17b-260a-1I, states that “Individuals who are eligible for ABI services shall be given free choice of all qualified providers of each service included in his or her plan of care.” When I exercised this right to choice, DSS refused to authorize service provision and payment to an alternate DSS/ Allied approved provider of my choice, resulting in a complete absence of services. Sec. 17b-260a-1J7 states that “it is the responsibility of the Department to pay for approved ABI waiver services delivered by qualified providers through its fiduciary agent on behalf of the individual.”
While the Department may argue that a review of my service plan is necessary, additional evaluations are requested, etc., it cannot hold my services in suspense while these decisions are made by my team. I had a current Department approved ABI Waiver service plan. The Department has a responsibility and an obligation to provide me with these services until such time as any changes are made to my plan. Sec. 17b-260a-1J2c Responsibilities of the Department: “The Department shall assign social work staff to execute the following ABI responsibilities: implement the approved service plan and coordinate services provided to the individual under the waiver.” Furthermore, the Department has overstepped its authority; it is the interdisciplinary team that makes determinations about the service plan. This was done without an ABI Waiver team meeting. In addition, I was not present, nor was my advocate and neuropsychologist. Sec. 17b-260a-1G4: “the service plan shall be developed by an interdisciplinary team that includes the individual, his or her conservator, if any, the Department social worker assigned to coordinate the individual’s service plan, a neurophysiologist who is familiar with the individual, other clinical staff as needed, and any other person(s) of the individual’s choice.”
I requested the immediate re-instatement of my ABI Waiver plan, as written. By withholding both the authorization to provide services and payment, to an authorized provider, the Department has placed me at risk of re-institutionalization, has halted my means of financial self-support, has left me without the ability to meet my own basic needs, and has neglected to support me in the least restrictive environment.
Fortunately I am a strong advocate for myself and after many phone calls, including to my local Congressman's office, James Himes [D-CT4] I was able to have them reinstate my services - but not without cost to me as I went for so long without getting the services I needed.
It also brought to my attention the sad state of the system as it currently exists - it is designed to take advantage of people with disabilities. Another person with a Traumatic Brain Injury in my shoes would likely not have had the ability to advocate for him or herself as I did, and without services they would not have anybody else willing to do it on their behalf. This is a very disturbing situation and it shows how easy it is for states to discriminate against and take advantage of someone like me - it's like taking candy from a baby!
There is a national organization called the Sarah Jane Brain Foundation whose Advisory Board wrote a national plan (the National Pediatric Acquired Brain Injury Plan) which would help in situations such as mine. The plan calls for the development of 52 State Lead Centers of Excellence, which would, among other things, have case managers specially trained to assist children and young adults with brain injuries.
If the National PABI Plan was in place, that case manager would have stepped in during my crisis and been my advocate. These people would be trained to help those who cannot help themselves. Imagine what would have happened to someone else in my same shoes that did not know to contact the people that I contacted to get my services back! They would have not gotten them reinstated and would have ended up on the streets, in prison or dead.
Going through the aftermath of my TBI, I teamed up with The Sarah Jane Brain Foundation to help promote the need for a National Pediatric Acquired Brain Injury PABI plan, a proposed system of care that would be universally accessible for all children, and their families, regardless of where they live in the nation.
I would like to say I consider myself to be a very fortunate brain injury survivor, and to be a "voice" for these forgotten children and families.
In the words of Congressman Leonard Lance, the initial sponsor of HR 2600, “When a child suffers a brain injury, every American family is confronted with difficult decisions in terms of care, research and support. Systems of care are different from state to state, random from school district to school district and vary from one doctor’s office to another. What is needed is a national clearing house of information and resources for children impacted by brain injuries and their families.”
Specifically, Congressman Lance's legislation would create a national network of 52 State Lead Centers of Excellence, one for every state plus the District of Columbia and Puerto Rico, with the responsibility of implementing the PABI Plan based on their own state's unique demographics, geography, laws, infrastructure, financing and causes of brain injuries without duplicating current practices. The legislation will cover the entire continuum of care from prevention, treatment in acute medical facilities, reintegration back into the schools, communities and homes and then transitioning into an adult system of greater independent living.
The legislation will also focus on individuals with a Mild Traumatic brain injury, which accounts for more than 80 percent of brain injuries each year, commonly referred to as concussions, as well as rural communities, which account for 25 percent of the population and have higher incidence rates of brain injuries. For example, the 52 State Lead Centers would help children suffering from sports related injuries by providing additional information, resources and care.
Today more awareness has occurred, but there is still much to learn, much like no two brain injuries are alike. The learning impact between different students will also not be alike.
Some states place services for individuals with TBI under Developmental Disabilities or under Mental Health Services. TBI is separate and distinct from developmental and mental health diagnoses. Individuals with developmental disabilities and/or mental health issues may suffer a TBI. However, not all individuals with TBI have developmental or mental health issues. Finally, challenges and interventions implemented with survivors of TBI may be very different from those implemented with individuals with developmental disabilities, mental-health diagnoses and a dual-diagnosis of TBI and developmental disabilities and/or mental health issues. TBI is an injury “Injuries require care, care that we all need, care that this plan can provide!
Quick Facts about PABI:
1) PABI is the #1 leading cause of death and disability for American youth
2) PABI is caused by A) Trauma: traumatic brain injury (TBI), such as motor vehicle crashes, abusive head trauma/Shaken Baby Syndrome, sports-related concussions, falls, gunshot wounds, blast injury from war, etc. B) Non-trauma: strokes, brain tumors, meningitis, seizures, near-drowning, etc.
3) Over 765,000 American youth enter an Emergency Department annually with a new TBI
4) Over 80,000 American youth are hospitalized annually with a new TBI
5) Over 11,000 American youth die annually due to TBI
6) These numbers do not reflect the significantly greater number of TBI cases that are not identified nor the number of non-traumatic acquired brain injuries
7) Upwards of 80% of the youth in juvenile detention centers across America have some form of a brain injury
This Act develops a seamless, standardized, evidence-based system of care that will benefit many American families whose children have sustained brain injuries.
Congressman Lance's bill would ensure families wouldn’t have to reinvent the wheel when their child is impacted with a brain injury
Being a survivor of a TBI my journey made me all-too familiar with the difficulties of individuals and families working through the arbitrary system of care.
It's been 24 years since my injury and there is not a day that goes by where I'm not haunted by my past experiences and wake up in a sweat, yelling and screaming. I can't help but to be concerned about what the state is going to do to me next, all because I have a Traumatic Brain Injury TBI.
As a brain injury survivor, I know firsthand how awful it is to have lost my independence. I live and work a program 24/7, I have taken the advice to try and better myself and every time I have, the system has found a way to bring me down and leave me with no room to grow. I understand the advice people have given me and I have used it and have worked it all into my life on more than one occasion. Every time I put the tools in my "tool-box" (or should I say brain) in an attempt to better myself, the system has found a way of pulling me back down.
My back is against the wall!
Over time everyone in my family has moved out of Connecticut and they have asked me to go with them, I looked into it and was told that there is a 5 year waiting list for any ABI Services, and in order to get on the waiting list in that state that I needed to live there for 2 years before I got put on the list; been there, done that. Insanity is not doing the same thing over and over again expecting different results; insanity is doing the same thing over and over again knowing full well what the results will be.
It's bad enough trying to find anyone that knows anything about brain injury. I’ve been a participant in the Acquired Brain Injury (ABI) Waiver Program for several years in CT and I have YET to find anyone that I don’t need to tell what to do, or anyone that does not talk down to me like I’m a 2 year old.
I have kept in this “box” where I’m very limited on what I can do. I believe that my rehabilitation has been curtailed as a result. I am frequently required to see a doctor or go into a state team meeting and prove that I am disabled.
For years, I felt as though no one else knew what I was going through, but believe me; Traumatic Brain injury survivors almost ALWAYS experience the same things.
"HAVE A HEART - SAVE A BRAIN"
For myself, I wish on that July afternoon that there were a national PABI plan in place. I wish that the doctors, and nurses, and all the states, cops, judges, and people whoever had the power over me had a clue about TBI. I wish that when I needed it, there were people to turn to, answers to the questions I didn't even know I had, and the resources in place for me. I wonder how different my life and my family's lives would be today.
Patrick Donohue's dedication to his daughter is beyond words, he is a true leader and role model for every single parent in the world.
It's been an honor and privilege to be a part of their historic and groundbreaking work.
I support H.R.2600: National Pediatric Acquired Brain Injury Plan Act.
Sincerely,
Craig Sears,
A Voice for Traumatic Brain Injury
To Whom It May Concern.
My name is Craig Sears, and I am a Survivor of a Traumatic Brain Injury.
I am writing on behalf of the Sarah Jane Brain Foundation, and I am adding my support as a Traumatic Brain Injury advocate to their goal of creating a national model care system for children suffering from all Pediatric Acquired Brain Injuries (PABI). This program is sorely needed, and it will help thousands of children and their families overcome the difficulties following a Traumatic Brain Injury (TBI). It will also help raise awareness of TBI and help the thousands of other American adults who yearly suffer a TBI as result of accidents, falls, strokes, or by other means. And it will help protect the children of tomorrow from ever having to experience the horror and heartache of TBI. This coupled with the growing awareness that thousands of our troops returning from Iraq and Afghanistan too are suffering from TBI -- this injury is being called the signature wound of these conflicts. This is my Story:
My advocacy started as means to overcome my own difficulties. It's become my mission to make sure that no one else has to go through what I have.
It was July 9th, 1987, and it was a beautiful Connecticut summer afternoon. I was out driving my motorcycle. I had just turned 20 years old and I had a lot going for me. I was making a very good life for myself. I had a great family. I had a good job in construction and also as a part time mechanic. I was making good money for a kid my age. I had a great social life, lots of friends, and I was very popular. I had a great girlfriend. I had 2 cars, a motorcycle, and lived in a nice condo right on the water. I was living the American Dream. Life was great.
And in a heartbeat, it was all gone. Suddenly, I came up over a hill, and there was a car going the wrong way. It was too late. I couldn't stop and we collided. I was thrown nearly 40 feet over on-coming traffic. I landed head first into a curb.
I have no memory of the next 6 months. That period of time is a Black Hole in my life. I was in and out of a coma, undergoing multiple surgeries. The doctors operated on my head, and did what they could to patch up my body. This was the beginning of my physical recovery.
Though my body was healing, a bigger problem went untreated. And no one realized it. Insult was added to injury. This is where I fell through the cracks. Despite having my head in a cast, no one identified the true nature of my injury me as being a Traumatic Brain Injury (TBI). That oversight would cost me dearly in the years to come. I had no idea of the hell I was in for. Had I known what lay ahead, I would never have fought so damn hard to make it. I would have given up, lay down and died.
My struggles were constant. I had to relearn everything, How to walk, how to talk, how to eat, how to use the bathroom. How to care for myself, and then there was the incessant pain, the physical pain of my body overcoming weakness and injury. Worse yet there was the anguish of not knowing who I was.
Things went from bad to worse. Soon, the treatment center I was in transferred me to a mental health ward. I spent the next nine months locked in against my will, slowly regaining my memory, and a growing sense that this type of life wasn't for me.
I was angry. I wanted out. I began calling out to anyone who would listen to me Town officials, State Government, anyone who could get me out. While I knew I didn't need to be there, I did know that I needed help in other areas. But the help I needed wasn't available. This was not a mental health issue.
Eventually, a sympathetic ear at the Connecticut Governor's office helped arrange a meeting between my family, my doctors, and a state representative. I told them all, I wanted out, I needed out.
And it was clear to them that I was right. But where was I to go?
I had only one real option, and that was my family. Yet I didn't want to be a burden to my parents. I applied for Section 8 disability housing, and was put on a waiting list. I was turned down repeatedly.
So in the meantime, my family helped me get into my own one room efficiency apartment. While a big step up from the psychiatric ward, this too, was far from ideal. I now found myself living alone, except for the roaches and rats, and vulnerable, in an area known for drug dealers and prostitutes.
I wandered those mean streets, trying to regain some kind of memory. I would watch other people to see what they were doing, how they were acting in order to regain anything that I knew how to do before the accident. All I could figure out at this time was that this was not who I was.
With time and my family’s help, things began to improve for me. My mother got me a weight set, my father bought me a bicycle and I started volunteering at a local hospital. That gave me access to their physical therapy rooms. I'd learn what they were doing for rehabilitation and go back home at night to do the exercises on my own in order to regain my strength and abilities. But without any medical oversight, I'd over do it. I hurt myself repeatedly. Many times, my mother took me to the hospital because I hurt so bad that I couldn't walk or move.
Socially, things were awkward. One day after volunteering, I was leaving the hospital. I saw a woman fall to the floor. My instincts were to grab a wheelchair, put her in it and run her into the emergency room. I thought I was doing the right thing. But in reality, my actions upset the emergency room staff, and the next day, the hospital asked me not to return. I was crushed.
One of the lasting consequences of my TBI was that I would slur my words when I spoke. And my balance would be off when I walked. Instead of realizing that this is how I am, people just assumed that I was drinking or using drugs. No one would take me seriously.
It became harder and harder to find where I fit in. With the help of my family, I moved into and out of different apartments. But the pieces of mind and my life didn't fit quite right. I was restless, and depressed. I struggled to cope. I turned to what I had seen so many others do on the streets: alcohol and drugs. I had learned the wrong way to deal with my problems. I thought it would help me forget all that I had gone through.
Everything I had long fought for, I now started to lose. It was all slipping away. I found myself alone and getting into trouble more often, ending up in shelters, local lockups, and numerous mental health facilities all over the state. I continued to spiral down, and soon I wound up homeless, and not long after that, in prison.
I had several brushes with the law. While I struggled daily to live with my brain injury, I ended up with several minor arrests for public urination and things of that sort. The state of Connecticut did find a way to use my injury against me. It was a probation violation, for which I would ultimately receive a five-year prison term. I spent five years locked up in a level-four high-security prison where I received absolutely no help for my disabilities. I was locked in an 8'x 10' cell twenty-four hours a day surrounded by gang members, rapists, killers, and child molesters. All for peeing in a garage, does that sound like justice to you?
The police, the court, the judge and the law, didn't know, care, or consider my TBI. And once behind bars, neither did the warden. I served five-years for what other people would sleep off overnight in the local lock-up, and then clear up with a brief court appearance. Again, there were no programs, no early release, or time off for good behavior. TBI or not, I served every measure of that sentence to the fullest. Common courtesy prevents me from sharing here. It was hell.
Somehow, I survived to be released in 2003. Life though continues to be a struggle. I have no friends. I have no money. I have few options, and fewer choices. I am very uncertain of my future. I still want the American Dream, but it feels further away than ever. I want to be hopeful, but I know all too well how quickly good can go bad in life. But I try my best to help those with Traumatic Brain Injury (TBI) get the help we need, and to avoid the mistakes, and missteps I made.
In the 1990's I became a member of Connecticut's class action lawsuit working along with the Connecticut Brain Injury Association advocating for Connecticut's Acquired Brain Injury/Traumatic Brain Injury (ABI/TBI) Medicaid Waiver, implemented in 1999. This waiver allows the state to permit organizations to provide non-medical services to people with TBI enabling them to live in the community outside of nursing homes and institutions.
While in prison, I learned that I was part of a class action lawsuit that resulted in the implementation of Connecticut’s ABI/TBI Medicaid Waiver Program. I immediately requested that I be provided a program upon my release from prison! Thank God My mother was able to get me into a program after 16 years of being thrown into this deplorable life of hell!
During and after the program, I needed to find a place to call home, after 18 years of waiting and being turned down; I turned to a local Congressman's office for help, Former Congressman Christopher Shays. Within 2 months, they cut through the red tape, and I finally received recognition of my TBI. And I was accepted into a HUD subsidized housing unit.
(Fact) - The US says we have rights; but the State's trample all over them as if they are immune to our constitutional rights.
Due to my injury I have memory problems, speech problems, balance issues and many other things. I am disabled because of this and receive services from the state, which enable me to remain in the community instead of in a nursing home, in prison or on the streets. However, the State of Connecticut wrongly took away those services, for no reason and without notice.
I have been an active and effective advocate for the brain injury survivor community and a participant in the Acquired Brain Injury (ABI) Waiver Program for several years. Prior to obtaining waiver services, and as a result of a lack of community-based supports, I was imprisoned and institutionalized. It is my goal to continue to strive for independence with appropriate supports, and to continue my advocacy efforts for other survivors. With these goals in mind my ABI Waiver Service plan was developed in a truly person-centered cooperative team approach. My specific needs and goals were addressed through the design of a unique employment support program, and structured services that address my needs.
(I'm damned if I do and I'm damned if I don't.) – From my Fair Hearing Statement
After an annual review, of my current ABI Waiver service plan was approved, dated to commence May of 2009, and was signed by two Department of Social Services (herein referred to as the Department) social workers, Carolyn Wright, my former social worker, and Victor Estay, my current social worker, and social work supervisor, Gary Vertula. I had recently issued to the Department a complaint about an approved ABI Waiver provider that was not meeting my needs. The provider and I agreed to part ways, leaving me without services. This service lapse should have been temporary; however, through time delays and a refusal to authorize both service provision and payment to an approved provider selected by me, the Department has essentially suspended all of my ABI Waiver services without a formal notice, and without cause. Despite having a current service plan that was approved by the Department, I have been without any services since August 29, 2009.
Sec. 17b-260a-1I, states that “Individuals who are eligible for ABI services shall be given free choice of all qualified providers of each service included in his or her plan of care.” When I exercised this right to choice, DSS refused to authorize service provision and payment to an alternate DSS/ Allied approved provider of my choice, resulting in a complete absence of services. Sec. 17b-260a-1J7 states that “it is the responsibility of the Department to pay for approved ABI waiver services delivered by qualified providers through its fiduciary agent on behalf of the individual.”
While the Department may argue that a review of my service plan is necessary, additional evaluations are requested, etc., it cannot hold my services in suspense while these decisions are made by my team. I had a current Department approved ABI Waiver service plan. The Department has a responsibility and an obligation to provide me with these services until such time as any changes are made to my plan. Sec. 17b-260a-1J2c Responsibilities of the Department: “The Department shall assign social work staff to execute the following ABI responsibilities: implement the approved service plan and coordinate services provided to the individual under the waiver.” Furthermore, the Department has overstepped its authority; it is the interdisciplinary team that makes determinations about the service plan. This was done without an ABI Waiver team meeting. In addition, I was not present, nor was my advocate and neuropsychologist. Sec. 17b-260a-1G4: “the service plan shall be developed by an interdisciplinary team that includes the individual, his or her conservator, if any, the Department social worker assigned to coordinate the individual’s service plan, a neurophysiologist who is familiar with the individual, other clinical staff as needed, and any other person(s) of the individual’s choice.”
I requested the immediate re-instatement of my ABI Waiver plan, as written. By withholding both the authorization to provide services and payment, to an authorized provider, the Department has placed me at risk of re-institutionalization, has halted my means of financial self-support, has left me without the ability to meet my own basic needs, and has neglected to support me in the least restrictive environment.
Fortunately I am a strong advocate for myself and after many phone calls, including to my local Congressman's office, James Himes [D-CT4] I was able to have them reinstate my services - but not without cost to me as I went for so long without getting the services I needed.
It also brought to my attention the sad state of the system as it currently exists - it is designed to take advantage of people with disabilities. Another person with a Traumatic Brain Injury in my shoes would likely not have had the ability to advocate for him or herself as I did, and without services they would not have anybody else willing to do it on their behalf. This is a very disturbing situation and it shows how easy it is for states to discriminate against and take advantage of someone like me - it's like taking candy from a baby!
There is a national organization called the Sarah Jane Brain Foundation whose Advisory Board wrote a national plan (the National Pediatric Acquired Brain Injury Plan) which would help in situations such as mine. The plan calls for the development of 52 State Lead Centers of Excellence, which would, among other things, have case managers specially trained to assist children and young adults with brain injuries.
If the National PABI Plan was in place, that case manager would have stepped in during my crisis and been my advocate. These people would be trained to help those who cannot help themselves. Imagine what would have happened to someone else in my same shoes that did not know to contact the people that I contacted to get my services back! They would have not gotten them reinstated and would have ended up on the streets, in prison or dead.
Going through the aftermath of my TBI, I teamed up with The Sarah Jane Brain Foundation to help promote the need for a National Pediatric Acquired Brain Injury PABI plan, a proposed system of care that would be universally accessible for all children, and their families, regardless of where they live in the nation.
I would like to say I consider myself to be a very fortunate brain injury survivor, and to be a "voice" for these forgotten children and families.
In the words of Congressman Leonard Lance, the initial sponsor of HR 2600, “When a child suffers a brain injury, every American family is confronted with difficult decisions in terms of care, research and support. Systems of care are different from state to state, random from school district to school district and vary from one doctor’s office to another. What is needed is a national clearing house of information and resources for children impacted by brain injuries and their families.”
Specifically, Congressman Lance's legislation would create a national network of 52 State Lead Centers of Excellence, one for every state plus the District of Columbia and Puerto Rico, with the responsibility of implementing the PABI Plan based on their own state's unique demographics, geography, laws, infrastructure, financing and causes of brain injuries without duplicating current practices. The legislation will cover the entire continuum of care from prevention, treatment in acute medical facilities, reintegration back into the schools, communities and homes and then transitioning into an adult system of greater independent living.
The legislation will also focus on individuals with a Mild Traumatic brain injury, which accounts for more than 80 percent of brain injuries each year, commonly referred to as concussions, as well as rural communities, which account for 25 percent of the population and have higher incidence rates of brain injuries. For example, the 52 State Lead Centers would help children suffering from sports related injuries by providing additional information, resources and care.
Today more awareness has occurred, but there is still much to learn, much like no two brain injuries are alike. The learning impact between different students will also not be alike.
Some states place services for individuals with TBI under Developmental Disabilities or under Mental Health Services. TBI is separate and distinct from developmental and mental health diagnoses. Individuals with developmental disabilities and/or mental health issues may suffer a TBI. However, not all individuals with TBI have developmental or mental health issues. Finally, challenges and interventions implemented with survivors of TBI may be very different from those implemented with individuals with developmental disabilities, mental-health diagnoses and a dual-diagnosis of TBI and developmental disabilities and/or mental health issues. TBI is an injury “Injuries require care, care that we all need, care that this plan can provide!
Quick Facts about PABI:
1) PABI is the #1 leading cause of death and disability for American youth
2) PABI is caused by A) Trauma: traumatic brain injury (TBI), such as motor vehicle crashes, abusive head trauma/Shaken Baby Syndrome, sports-related concussions, falls, gunshot wounds, blast injury from war, etc. B) Non-trauma: strokes, brain tumors, meningitis, seizures, near-drowning, etc.
3) Over 765,000 American youth enter an Emergency Department annually with a new TBI
4) Over 80,000 American youth are hospitalized annually with a new TBI
5) Over 11,000 American youth die annually due to TBI
6) These numbers do not reflect the significantly greater number of TBI cases that are not identified nor the number of non-traumatic acquired brain injuries
7) Upwards of 80% of the youth in juvenile detention centers across America have some form of a brain injury
This Act develops a seamless, standardized, evidence-based system of care that will benefit many American families whose children have sustained brain injuries.
Congressman Lance's bill would ensure families wouldn’t have to reinvent the wheel when their child is impacted with a brain injury
Being a survivor of a TBI my journey made me all-too familiar with the difficulties of individuals and families working through the arbitrary system of care.
It's been 24 years since my injury and there is not a day that goes by where I'm not haunted by my past experiences and wake up in a sweat, yelling and screaming. I can't help but to be concerned about what the state is going to do to me next, all because I have a Traumatic Brain Injury TBI.
As a brain injury survivor, I know firsthand how awful it is to have lost my independence. I live and work a program 24/7, I have taken the advice to try and better myself and every time I have, the system has found a way to bring me down and leave me with no room to grow. I understand the advice people have given me and I have used it and have worked it all into my life on more than one occasion. Every time I put the tools in my "tool-box" (or should I say brain) in an attempt to better myself, the system has found a way of pulling me back down.
My back is against the wall!
Over time everyone in my family has moved out of Connecticut and they have asked me to go with them, I looked into it and was told that there is a 5 year waiting list for any ABI Services, and in order to get on the waiting list in that state that I needed to live there for 2 years before I got put on the list; been there, done that. Insanity is not doing the same thing over and over again expecting different results; insanity is doing the same thing over and over again knowing full well what the results will be.
It's bad enough trying to find anyone that knows anything about brain injury. I’ve been a participant in the Acquired Brain Injury (ABI) Waiver Program for several years in CT and I have YET to find anyone that I don’t need to tell what to do, or anyone that does not talk down to me like I’m a 2 year old.
I have kept in this “box” where I’m very limited on what I can do. I believe that my rehabilitation has been curtailed as a result. I am frequently required to see a doctor or go into a state team meeting and prove that I am disabled.
For years, I felt as though no one else knew what I was going through, but believe me; Traumatic Brain injury survivors almost ALWAYS experience the same things.
"HAVE A HEART - SAVE A BRAIN"
For myself, I wish on that July afternoon that there were a national PABI plan in place. I wish that the doctors, and nurses, and all the states, cops, judges, and people whoever had the power over me had a clue about TBI. I wish that when I needed it, there were people to turn to, answers to the questions I didn't even know I had, and the resources in place for me. I wonder how different my life and my family's lives would be today.
Patrick Donohue's dedication to his daughter is beyond words, he is a true leader and role model for every single parent in the world.
It's been an honor and privilege to be a part of their historic and groundbreaking work.
I support H.R.2600: National Pediatric Acquired Brain Injury Plan Act.
Sincerely,
Craig Sears,
A Voice for Traumatic Brain Injury
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