The Michael McNesby Full Funding for Adults with I/DD Act (HB 104) will ensure that funding for services is brought up to levels recommended by the [Delaware] Department of Health and Social Services over the next 3 years.
Currently, funding is inadequate, which stresses the entire system and could put adults receiving services in danger. The lack of proper funding means that the Direct Support Professionals that deliver services are underpaid, which leads to employee turnover, which can diminish the quality of the care.
The McNesby Act will deliver $9 million in state funding to programs for adults with intellectual and developmental disabilities in the next state budget.
This video is from Justin Caine of Lansing, Michigan. Justin is a man with a disability who co-founded Good Fruit Video, a video production company which specializes in telling stories of organizations, programs and events to potential customers, clients, sponsors and participants. He was also the Vice-Chair of the Michigan Developmental Disabilities Council. His company helped produce the above video. For more information on Justin's business and numerous other activites, see his Linkedin page.
PHI (Paraprofessional Healthcare Institute) issued a report in February 2015 showing how the home care workforce is negatively affected by poverty-level wages, thereby degrading the quality of care for millions of elders and people with disabilities. This is an especially timely topic with the federal government and federally-funded advocacy groups for people with developmental disabilities aggressively pressuring states to close institutions and other types of congregate care and services, often against the wishes of the people receiving this care and their families. The new rule for Home and Community Based Services (HCBS) from CMS, the federal agency that regulates Medicaid and Medicare, as it is currently written, will inevitably lead to people with DD moving to less regulated settings, cared for by workers who are paid less with fewer benefits or other incentives to remain in their jobs. The PHI Website explains the effect of low wages on care quality as reported in “Paying the Price - How Poverty Wages Undermine Home Care in America”:
Poor wages and nonexistent benefits are tied to high turnover rates
within the home care workforce, Paying the Price reports. Roughly one
out of every two home care workers leaves her job every year. High
turnover correlates with poorer care outcomes for elders and people with
disabilities, who come to rely on home care workers to ensure their
quality of life. "When people can't find the care they need for the
family members they love, it is a genuine family crisis," the report
says. "The outsized growth in our population of elders is going to make
this problem far worse in the decades to come." The report notes that
demand for home care jobs is expected to grow by approximately 50
percent between the years 2012 and 2022, a rate five times higher than
overall job growth during that span.
The wages of people working in the three main categories of direct care (personal care aides, home health aides, and nursing assistants) have fallen from 2003 to 2013 overall with only a small number of states showing an increase in wages.
The Texas Fort Worth Star-Telegram ran a two-part series by Deanna Boyd investigating the tragic 2013 death of a 39-year-old woman with severe multiple disabilities who was receiving Medicaid-funded Home and Community Based services while being cared for by her sister and father:
Even with her multiple severe disabilities, Marci Garvin lived at home, attended a regular school, and later worked in paid supported employment. Her mother was a proponent of full inclusion and Marci’s story was an inspiration to others that someone with disabilities as severe as hers can live a full life in the community and work at a paying job. How, then, did Marci Garvin end up in the hospital, two days before she died, with “more than 20 major bedsores…covered in urine, feces and bugs..." at almost half her normal weight?
According to the Fort Worth Star-Telegram, “Marci spent her last years under the primary care of an increasingly overwhelmed sister battling her own mental illness while also caring for a special-needs daughter and an ailing mother…” Marci's sister, Tabby Martinjak, admitted to investigators that she was being treated “for...hoarding, as well as other mental illness, including bipolar disorder, manic depression, post-traumatic stress disorder and obsessive-compulsive disorder.”
Also, according the news reports, “The [Texas] Department of Disability and Aging (DADS) contracts with both public and private HCS [Home and Community-Based Services] providers, reimbursing them with Medicaid dollars. As of December, 21,676 clients were receiving HCS services in Texas with more than 72,000 on a waiting or 'interest' list….Marci was enrolled in the program’s foster care option, allowing her to receive services from her HCS provider while living at home. Her mother, and later Martinjak, were paid for being Marci’s primary caregiver, receiving about $3,000 a month in Medicaid funding at the time of the Marci’s death.” Investigators found a lack of oversight in Marci’s tragic death:
" Employees of the two service providers and MHMR knew that Martinjak was a hoarder whose boxes of possessions and clutter reached from floor to ceiling of the family’s southwest Fort Worth home, but they did little to address it despite the fire and safety risk it posed. Martinjak repeatedly avoided home visits and inspections, yet was allowed to continue her paid role as foster care provider for her sister.
"Dianne Salas, a care coordinator with Southern Concepts at the time of Marci’s death, was required to assess Marci’s home yearly but hadn’t been inside the Garvins’ house since 2010. Still, Salas filled out home assessments in 2011 and 2012, stating that the home was safe for Marci.
"Marci had not seen her primary care doctor since 2010 despite contrary statements from her sister and had not received a required nursing assessment from her service provider."
Although Home and Community-Based Services are invaluable to families who choose to keep disabled family members at home and engaged in their communities, a lack of oversight, unrealistic demands on caregivers, and neglect can lead to tragic events such as this. The reporter Deanna Boyd,from the Fort Worth Star-Telegram, has done an excellent job of covering this important story.
...Overview of autism/DD housing options based on a single-family home
model, including living with parents, legacy homes, licensed group
homes, unlicensed co-ops and adult foster care.
...Overview of autism/DD housing options based on multifamily or
congregate models, including market-rate apartments, affordable
"set-aside" units, investment-based multifamily complexes, and
nonprofit intentional communities.
...Overview of many of the policy changes necessary to
facilitate the creation of new housing options for adults with autism
or developmental disability.
These remarks were made when Thom Tillis was the North Carolina Speaker of the House. He is now the U.S. Senator-elect from North Carolina:
"What we have to do is find a way to divide and conquer the people who
are on assistance," Tillis said. "We have to show respect for that woman
who has cerebral palsy and had no choice, in her condition, that needs
help and that we should help. And we need to get those folks to look
down at these people who choose to get into a condition that makes them
dependent on the government and say at some point, ‘You’re on your own.
We may end up taking care of those babies, but we’re not going to take
care of you.’ And we’ve got to start having that serious discussion."
*************************
Daniese McMullin-Powell, the Chair of the Delaware State Council for Persons with Disabilities, did not hold back when she talked to reporter Beth Miller about federal funds paying for services for people with disabilities who choose to live in congregate care (more than 3 or 4 people with disabilities living together):
"...she
does not want government money used to support segregated communities
for people with disabilities. That money should go to those who can live
in ordinary community settings and want to do so.
"'This
would suck up every drop of Medicaid money there is,' she said. 'If
they want to choose congregate living, then let CMS use only nursing
home money. Don't suck it all up because you want to live in summer camp
forever.'"
In response to these comments, Dr. Lanny Edelsohn wrote in an opinion piece about McMullin-Powell's remarks: "...I
am nonetheless most grateful for her finally revealing something that
many in the disability community have long suspected but no one has yet
had the courage or honesty to admit: that at the end of the day,
this battle over the direction of the Medicaid waiver, while
superficially clothed in the appealing rhetoric of 'rights,' is, like
many things, actually about money." [emphasis added]
*****************************
Then there is this from The Press Democrat: "Close to Home: Time to end war over the Sonoma Developmental Center" by Kathleen Miller, 11/8/14. Kathleen is president of the Parent Hospital Association at the Sonoma Developmental Center in Sonoma Valley, CA.
"...Following the [Halloween] parade, I took my son out to lunch. While at one of the local restaurants, I ran into a former SDC employee who now works for a community day program provider. Her clients were eating there also, and we enjoyed a brief minute to chat. I reminded her that it was parade day at Sonoma Developmental Center. She had always been an enthusiastic participant during her years working at the center, and we both agreed what fun it would be if her community clients could join with SDC residents and participate in the parade. "She shook her head and shared that it was frowned upon for those in her program to in any way participate at SDC events. I didn’t have to ask why. It is an old battle that continues today. "As long as I have been aware of developmental centers and community services outside of the centers, I have also been aware of the friction between them. Care providers tell their clients horror stories about what life is like inside developmental centers. They bring them to legislative hearings to urge for closure even if these same clients have never set foot inside of a developmental center." .........
Kathleen Miller would like to create "...a seamless system that serves all of the developmentally disabled populations, including those that regional centers struggle with. We need to find ways to use the Sonoma Developmental Center infrastructure to create something special, a system that can fill the gaps in care that exist in today’s system. We need a system that cannot only help the center’s residents but those in community setting where services are not working." She is disheartened by the old voices that only want closure, but she is also hearing new voices that give her hope: "These new voices either know nothing about the old battle lines or want to rise above them. It is my hope that together we will be those who decide the future of Sonoma Developmental Center and of the system of care going into the future."
This is an animation from the Madison House Autism Foundation Where will 4.903 million individuals live? Here are the facts: There are 3.775 million people with Intellectual and Developmental Disabilities (I/DD), 77%, who do not receive publicly funded residential supports. 1.127 million people with I/DD, or 23% do receive publicly funded supports. Of those, 56% live with family and 44% do not live with family. Of the 44% who do not live with family, 127,000k or 27% live in their own home. The other 73% live in group homes (290k), foster homes (44k), nursing facilities (34k), and less than 1k live in psychiatric facilities. From 2001 to 2011, 275k additional people got residential supports: 180k stayed with family and 95k moved out. 77k are on the waiting list for services needed in the next year. 853k are living with caregivers aged 60 or over. Remember: 3.775 MILLION OR 77% GET NO PUBLICLY-FUNDED SERVICES AT ALL!
JaLynn Prince from the Madison House Autism Foundation
The phrase, "going over the cliff", has become a standard description of what happens to far too many adults with autism who no longer qualify for educational services and are left with not much to do and nowhere to go. When the autism diagnosis includes intellectual disabilities, severe behavioral problems, and a need for constant care and supervision, family members are forced to adjust to an even more difficult situation than when their children were in school. Parents especially may feel a desperation that makes them wonder if this is a job they can ever retire from and what will happen when they can't do it anymore?
The Washington Post first reported a crime story on July 21, 2014, "Rockville, Md., couple charged with abusing twin 22-year-old autistic sons" by Dan Morse. Police came to the house with a search warrant on an unrelated matter and found the twins, locked in "a basement room with no furniture, no working lights and a single comforter on a bare tile floor." The men's parents locked the twins into the room at night and had removed furniture because it was soiled. The room was locked from the outside and smelled of urine. This led to further investigation and charges of abuse and false imprisonment brought against the parents.
The crime report set off a more general discussion about the lack of services for autistic adults and the difficulty in caring for people with the most severe and complex forms of autism. The Washington Post published another article on 7/26/14, "Coping with adult children’s autism, parents may face ‘least bad’ decisions" by Dan Morse. The article included a story, not about abuse and neglect, but about another autistic young man whose parents appear to be exceptionally resourceful in figuring out how to keep him safe while living in the family home. Nevertheless, they have had to make considerable sacrifices to take care of him and still face situations that even they are not prepared for:
"...As [John's father] speaks, his 18-year-old son John starts to pace and moan in the kitchen. John typically won’t sit down for dinner until he and his parents are around the table, holding hands, his father saying the blessing. Mark walks toward the kitchen, past the locked front door, the locked door to the garage, the locked door to the basement. Those barriers, along with a tracking device John wears, the burglar alarm and the fence around the house, are designed to keep him from wandering off.
"But sometimes, even that isn’t enough. Three years ago, wearing green pajamas, John made his way to a Metro train platform four miles away just before a train came barreling into the station. "For parents like the Bucknams, their children’s transition to adulthood is filled with gut-wrenching choices and challenges. The assistance connected with high school programs goes away. The best adult services often are at the end of long waiting lists. The pressures mount for parents to prepare for life after they’re gone…." Later in the article a quote from Mr. Bucknam appears that is apparently the inspiration for the title of the article: “'We can’t condone their choices,' says Mark Bucknam… 'But it’s possible that, in their minds, this was the least bad way to deal with this,' Bucknam says." This set off a reaction from a number of disability advocacy groups condemning the paper for, in their view, offering an excuse for, rather than condemnation of, abusive treatment of people with disabilities by their parents or other caregivers. I don't see it that way, but more about that later.
According to an article in the Tampa Bay Times, "Testing for profoundly disabled children gets increased attention", 2/26/2014, Florida parents are having difficulty exempting their children with profound disabilities from taking state standardized tests: "While her 11-year-old son Ethan lay dying last month, Andrea Rediske had to convince the boy's school district he could not take the state tests. "Ethan's teacher made daily visits to assess his progress — even when he was in hospice care. "'Seriously?' Rediske wrote in a Feb. 4 email to Orange County School Board member Rich Roach. 'Why is Ethan Rediske not meeting his sixth-grade hospital-homebound curriculum requirements? BECAUSE HE IS IN A MORPHINE COMA. We expect him to go any day.'" "The boy died three days later." Parents and teachers of these profoundly disabled students - students who cannot see or communicate who are required to answer questions about pictures they are shown, for example - are getting increased attention from the Florida legislature. There is an alternate assessment that can be given to 1% of Florida's school population, that better measures progress for many students with disabilities. Even the alternate standardized test, however, does not correlate with the performance of students with profound disabilities. Many parents feel the testing is disrespectful of their children and irrelevant to measuring the benefits of their educational programs. A bill has been introduced in the Florida legislature that will make it easier to exempt these students from standardized testing. Consideration is being given to changing teacher evaluations to give teachers of disabled students some slack so that they are not penalized by their students' test scores. State Education Commissioner Pam Stewart defends the use of assessments for all students: "'We all know that the only way to guarantee success in any endeavor is to set goals and measure our progress,' Stewart said. 'Measuring progress is key to successful learning, and I firmly believe that every child enrolled in a public school in Florida deserves the opportunity to have access to the best education possible. It would be a moral outrage to deny that opportunity to any child for any reason.'" Is standardized testing for these students accountability or lunacy? I vote Lunacy - 100%. And excuse me, while I go bang my head against a wall.
I was looking forward to freezing rain this morning, but we are getting more snow. And it is thundering. Blogging is definitely in the forecast, but this distraction will have to do for the moment. -JB
Micki Edelsohn has built 25 group homes in Delaware for people with developmental disabilities, but she is worried about the direction of the disability movement. In testimony before the Delaware Joint Finance Committee on February 21, 2013 she said this:
In 2011, President Obama appointed me to the President’s Committee for People with Intellectual Disabilities. This has given me the opportunity to see how things are trending at both a national and state level, and I must tell you I am deeply concerned about the direction of the disability movement.
In addition to my testimony, which you have been given, I have attached two extremely important documents, which I hope you will refer to often when thinking about the population for which I am advocating. One is the definition of an intellectual and developmental disability as Federally codified in the Developmental Disability Assistance and Bill of Rights. The definition is very exact and as you read it I ask you to think about the numerous ways a person with an intellectual and developmental disability can be affected, from mild to severe. The second document is the Olmstead decision on determining the placement of a person with an intellectual and developmental disability. In short, this document mandates that a person be placed in “the least restrictive most appropriate setting for each individual.” Unfortunately many, even in the disability community, are now using these laws and definitions and advocating for changes without considering “capacity”. They are gravitating towards a “one size fits all” approach for a population that is most vulnerable. The reality is that the intellectual capacity of those I advocate and care for range from those who have severe limitations to those who thrive in competitive employment, drive a car, may marry and, very appropriately, self advocate. One size does not fit this diverse population.
Let us NOT take away options but build on those that work. - See more
at:
http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.PSFY4HJZ.dpuf
...Let us NOT take away options but build on those that work.
In
2011, President Obama appointed me to the President’s Committee for
People with Intellectual Disabilities. This has given me the opportunity
to see how things are trending at both a national and state level, and I
must tell you I am deeply concerned about the direction of the
disability movement.
In addition to my testimony, which you have been given, I have attached
two extremely important documents, which I hope you will refer to often
when thinking about the population for which I am advocating. One is
the definition of an intellectual and developmental disability as
Federally codified in the Developmental Disability Assistance and Bill
of Rights. The definition is very exact and as you read it I ask you to
think about the numerous ways a person with an intellectual and
developmental disability can be affected, from mild to severe.
The second document is the Olmstead decision on determining the
placement of a person with an intellectual and developmental disability.
In short, this document mandates that a person be placed in “the least
restrictive most appropriate setting for each individual.” Unfortunately many, even in the disability community, are now using
these laws and definitions and advocating for changes without
considering “capacity”. They are gravitating towards a “one size fits
all” approach for a population that is most vulnerable. The reality is
that the intellectual capacity of those I advocate and care for range
from those who have severe limitations to those who thrive in
competitive employment, drive a car, may marry and, very appropriately,
self advocate. One size does not fit this diverse population. - See
more at:
http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf
In
2011, President Obama appointed me to the President’s Committee for
People with Intellectual Disabilities. This has given me the opportunity
to see how things are trending at both a national and state level, and I
must tell you I am deeply concerned about the direction of the
disability movement.
In addition to my testimony, which you have been given, I have attached
two extremely important documents, which I hope you will refer to often
when thinking about the population for which I am advocating. One is
the definition of an intellectual and developmental disability as
Federally codified in the Developmental Disability Assistance and Bill
of Rights. The definition is very exact and as you read it I ask you to
think about the numerous ways a person with an intellectual and
developmental disability can be affected, from mild to severe. - See
more at:
http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf
In
2011, President Obama appointed me to the President’s Committee for
People with Intellectual Disabilities. This has given me the opportunity
to see how things are trending at both a national and state level, and I
must tell you I am deeply concerned about the direction of the
disability movement.
In addition to my testimony, which you have been given, I have attached
two extremely important documents, which I hope you will refer to often
when thinking about the population for which I am advocating. One is
the definition of an intellectual and developmental disability as
Federally codified in the Developmental Disability Assistance and Bill
of Rights. The definition is very exact and as you read it I ask you to
think about the numerous ways a person with an intellectual and
developmental disability can be affected, from mild to severe. - See
more at:
http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf
In
2011, President Obama appointed me to the President’s Committee for
People with Intellectual Disabilities. This has given me the opportunity
to see how things are trending at both a national and state level, and I
must tell you I am deeply concerned about the direction of the
disability movement.
In addition to my testimony, which you have been given, I have attached
two extremely important documents, which I hope you will refer to often
when thinking about the population for which I am advocating. One is
the definition of an intellectual and developmental disability as
Federally codified in the Developmental Disability Assistance and Bill
of Rights. The definition is very exact and as you read it I ask you to
think about the numerous ways a person with an intellectual and
developmental disability can be affected, from mild to severe. - See
more at:
http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf
In
2011, President Obama appointed me to the President’s Committee for
People with Intellectual Disabilities. This has given me the opportunity
to see how things are trending at both a national and state level, and I
must tell you I am deeply concerned about the direction of the
disability movement.
In addition to my testimony, which you have been given, I have attached
two extremely important documents, which I hope you will refer to often
when thinking about the population for which I am advocating. One is
the definition of an intellectual and developmental disability as
Federally codified in the Developmental Disability Assistance and Bill
of Rights. The definition is very exact and as you read it I ask you to
think about the numerous ways a person with an intellectual and
developmental disability can be affected, from mild to severe. - See
more at:
http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf
In
2011, President Obama appointed me to the President’s Committee for
People with Intellectual Disabilities. This has given me the opportunity
to see how things are trending at both a national and state level, and I
must tell you I am deeply concerned about the direction of the
disability movement.
In addition to my testimony, which you have been given, I have attached
two extremely important documents, which I hope you will refer to often
when thinking about the population for which I am advocating. One is
the definition of an intellectual and developmental disability as
Federally codified in the Developmental Disability Assistance and Bill
of Rights. The definition is very exact and as you read it I ask you to
think about the numerous ways a person with an intellectual and
developmental disability can be affected, from mild to severe.
The second document is the Olmstead decision on determining the
placement of a person with an intellectual and developmental disability.
In short, this document mandates that a person be placed in “the least
restrictive most appropriate setting for each individual.”
Unfortunately many, even in the disability community, are now using
these laws and definitions and advocating for changes without
considering “capacity”. They are gravitating towards a “one size fits
all” approach for a population that is most vulnerable. The reality is
that the intellectual capacity of those I advocate and care for range
from those who have severe limitations to those who thrive in
competitive employment, drive a car, may marry and, very appropriately,
self advocate. One size does not fit this diverse population.
- See
more at:
http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf
In
2011, President Obama appointed me to the President’s Committee for
People with Intellectual Disabilities. This has given me the opportunity
to see how things are trending at both a national and state level, and I
must tell you I am deeply concerned about the direction of the
disability movement.
In addition to my testimony, which you have been given, I have attached
two extremely important documents, which I hope you will refer to often
when thinking about the population for which I am advocating. One is
the definition of an intellectual and developmental disability as
Federally codified in the Developmental Disability Assistance and Bill
of Rights. The definition is very exact and as you read it I ask you to
think about the numerous ways a person with an intellectual and
developmental disability can be affected, from mild to severe.
The second document is the Olmstead decision on determining the
placement of a person with an intellectual and developmental disability.
In short, this document mandates that a person be placed in “the least
restrictive most appropriate setting for each individual.”
Unfortunately many, even in the disability community, are now using
these laws and definitions and advocating for changes without
considering “capacity”. They are gravitating towards a “one size fits
all” approach for a population that is most vulnerable. The reality is
that the intellectual capacity of those I advocate and care for range
from those who have severe limitations to those who thrive in
competitive employment, drive a car, may marry and, very appropriately,
self advocate. One size does not fit this diverse population.
- See
more at:
http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf
In
2011, President Obama appointed me to the President’s Committee for
People with Intellectual Disabilities. This has given me the opportunity
to see how things are trending at both a national and state level, and I
must tell you I am deeply concerned about the direction of the
disability movement.
In addition to my testimony, which you have been given, I have attached
two extremely important documents, which I hope you will refer to often
when thinking about the population for which I am advocating. One is
the definition of an intellectual and developmental disability as
Federally codified in the Developmental Disability Assistance and Bill
of Rights. The definition is very exact and as you read it I ask you to
think about the numerous ways a person with an intellectual and
developmental disability can be affected, from mild to severe.
The second document is the Olmstead decision on determining the
placement of a person with an intellectual and developmental disability.
In short, this document mandates that a person be placed in “the least
restrictive most appropriate setting for each individual.”
Unfortunately many, even in the disability community, are now using
these laws and definitions and advocating for changes without
considering “capacity”. They are gravitating towards a “one size fits
all” approach for a population that is most vulnerable. The reality is
that the intellectual capacity of those I advocate and care for range
from those who have severe limitations to those who thrive in
competitive employment, drive a car, may marry and, very appropriately,
self advocate. One size does not fit this diverse population.
- See
more at:
http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf
In
2011, President Obama appointed me to the President’s Committee for
People with Intellectual Disabilities. This has given me the opportunity
to see how things are trending at both a national and state level, and I
must tell you I am deeply concerned about the direction of the
disability movement.
In addition to my testimony, which you have been given, I have attached
two extremely important documents, which I hope you will refer to often
when thinking about the population for which I am advocating. One is
the definition of an intellectual and developmental disability as
Federally codified in the Developmental Disability Assistance and Bill
of Rights. The definition is very exact and as you read it I ask you to
think about the numerous ways a person with an intellectual and
developmental disability can be affected, from mild to severe.
The second document is the Olmstead decision on determining the
placement of a person with an intellectual and developmental disability.
In short, this document mandates that a person be placed in “the least
restrictive most appropriate setting for each individual.”
Unfortunately many, even in the disability community, are now using
these laws and definitions and advocating for changes without
considering “capacity”. They are gravitating towards a “one size fits
all” approach for a population that is most vulnerable. The reality is
that the intellectual capacity of those I advocate and care for range
from those who have severe limitations to those who thrive in
competitive employment, drive a car, may marry and, very appropriately,
self advocate. One size does not fit this diverse population.
- See
more at:
http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf
In
2011, President Obama appointed me to the President’s Committee for
People with Intellectual Disabilities. This has given me the opportunity
to see how things are trending at both a national and state level, and I
must tell you I am deeply concerned about the direction of the
disability movement.
In addition to my testimony, which you have been given, I have attached
two extremely important documents, which I hope you will refer to often
when thinking about the population for which I am advocating. One is
the definition of an intellectual and developmental disability as
Federally codified in the Developmental Disability Assistance and Bill
of Rights. The definition is very exact and as you read it I ask you to
think about the numerous ways a person with an intellectual and
developmental disability can be affected, from mild to severe.
The second document is the Olmstead decision on determining the
placement of a person with an intellectual and developmental disability.
In short, this document mandates that a person be placed in “the least
restrictive most appropriate setting for each individual.”
Unfortunately many, even in the disability community, are now using
these laws and definitions and advocating for changes without
considering “capacity”. They are gravitating towards a “one size fits
all” approach for a population that is most vulnerable. The reality is
that the intellectual capacity of those I advocate and care for range
from those who have severe limitations to those who thrive in
competitive employment, drive a car, may marry and, very appropriately,
self advocate. One size does not fit this diverse population.
- See
more at:
http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf
It can be cold up here, even in August. As we were sitting huddled around the fireplace, throwing logs on the fire, this song from the 1970s came to mind. Here it is sung by Tompall Glaser. Lyrics are by Shel Silverstein. This has nothing to do with my personal life, but parts of it ring true for people I know.
From the Website for Benjamin's Hope in Ottawa County, Michigan:
Benjamin's Hope will be a first of its kind community model designed
to address the multifaceted needs of individuals and families affected
by autism and developmental disability.
An emerging, interactive community where people with extraordinary needs will realize a future of meaning, security and hope.
Our mission is to be an embracing natural setting where people with
disability and the community gather for Christ-centered fellowship,
treatment, housing and meaningful work.
On May 20, 2013 a U.S. House Energy and Commerce Subcommittee on Oversight and Investigations held a hearing on the federal Substance Abuse and Mental Health Services Administration (SAMHSA) and how well it serves people with severe mental illness. The agency was criticized for providing funding to advocacy groups that believe that mental illness is not an illness, that it should not be treated with medication, and that treatment of mental illness infringes on the rights of people who are mentally ill. SAMHSA also funds Protection and Advocacy agencies in every state to provide legal services to people with mental illness. These agencies came under particularly close scrutiny for their overzealous and sometimes dangerous advocacy that prevents severely mentaly ill patients from receiving treatment that could help them. [These are the same P&A's that provide legal services for people with developmental disabilities funded by the Developmental Disabilities Assistance and Bill of Rights Act, the DD Act.]
In testimony before the committee, Joe Bruce, the father of a man with paranoid schizophrenia who was involuntarily committed to a mental hospital in Augusta, Maine in 2006, described how his son was assisted by advocates from the Disability Rights Center of Maine (Maine's P&A agency) to be released early from the hospital without medication and sent home to live with his parents. The incident ended tragically with the son William Bruce murdering his mother Amy in their home.
Here is a link to a video of Joe Bruce's compelling testimony before the committee.
The involvement of disability rights advocates in this case did not end with the tragedy of Amy Bruce's murder. Here are some excerpts from Joe Bruce's written testimony :
"The doctor’s decision to release him [William Bruce], which resulted in such a tragic outcome, was made without the benefit of all of Will’s history or any input from Amy and me." ...
"After his commitment to Riverview by the criminal court, I applied to become his guardian. Will was agreeable to this until, incredibly, a patient advocate told him, 'The guardianship is a bad idea. It would give your father complete power over you.' The attending physician (a new doctor), undoubtedly at the urging of DRCM [Disability Rights Center of Maine], refused to provide the evaluation required in the guardianship application. He told me, 'I could never participate in anything that would cause your son to be considered an incapacitated person.' Bear in mind that at this point in time, Will had been placed in the hospital after being found incompetent to even stand trial!"[emphasis added]
Joe Bruce finally did become Will's guardian and only then did he learn the role of patient advocates in his son's premature and unmedicated release: "The patient advocate, a Trish Callahan, told the treating doctor that DRCM regarded Amy and me as a 'negative force in Will’s life. Amy and I had never met any of these people or even heard of Disability Rights Center of Maine. In the treatment meetings, she acted like a criminal defense lawyer. She openly coached Will on how to answer the doctor’s questions so as to get Will the least treatment and the earliest release. She did this in the face of strongly contrary evidence of Will’s unsuitability for unmedicated release." ... "Lest anyone believe this is a local, isolated occurrence, the National Disability Rights Network [NDRN], responding to the Wall Street Journal’s page one article concerning Will’s case, defended the actions of DRCM, and even prepared talking points to deflect criticism. The patient advocates can do this with impunity because they are literally accountable to no one... "
Joe Bruce and other families in Maine worked to change the only two options available to the courts at the time for people with severe mental illness: either place them in a hospital or release them unconditionally. A third option that was eventually adopted by the state, although opposed by patient advocates, is known as Assisted Outpatient Treatment that allows for the person to be released into the community with the condition that he remain on medication.
"As another example of DRCM’s lobbying influence in this area, while the Maine families and I were busy working on the AOT law, DRCM was successful in getting a bill through the Maine legislature to make it more difficult for families to become guardians. Becoming a guardian is the only way families of adult patients can be involved in the treatment of their loved ones where the patients are unwilling or unable to consent. Why do PAIMIs [P&A advocates] want guardianship to be more difficult? Because a guardianship lifts HIPAA secrecy and allows the guardians into the treatment meetings." ... "Ironically and horribly, Will was only able to get treatment by killing his mother." ... "Tragedy visits families every day. That is a sad fact of life. But an unbearable aspect of Amy’s death is that my own tax dollars helped make it possible..."
For people with Developmental Disabilities, abuses by DD Act programs including Protection and Advocacy have been documented in detail. The DD Act of 2000 has not been reauthorized in 13 years. Instead, the programs continue to get funding every year with very little oversight by Congress. This needs to change. Congressional oversight hearings would very likely reveal the same kinds of abuses by developmental disability advocates that they are finding with advocates for the severely mentally ill.
Harbor House Ministries is a faith-based non-profit organization in Jenison, Michigan, west of Grand Rapids. It provides homes for adults with severe developmental disabilities in three spacious 12-bed group homes. Harbor House also has a large activity center with a therapy pool and many planned community outings and events. From the Harbor House Web site: "Founded by families of adults with severe impairments, we know that
family members are the best advocates for any individual. We work hard
to maintain an atmosphere where family is valued and welcome all the
time. We seek not to replace, but to partner with families in providing
the best care and enriching environment possible."
