I have two adult sons with profound intellectual and developmental disabilities (IDD) as well as friends who have severely autistic family members. What these disabled populations have in common is that they are difficult and expensive to serve, no matter where they live. Finding appropriate services and residential settings is a relentless and frustrating task for most families, especially when choices are deliberately limited to encourage a one-size-fits-all mentality that promotes the idea that everyone can be fully integrated into "the community".
These stories about severely autistic children and adults have many parallels in the world of severe and profound IDD.
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“Falling through the cracks” is a phrase that is frequently used to describe what happens to people with severe autism when they move from school to adult life without the safety net of services provided by the educational system. This also describes what happens to autistic children, many of whom have intellectual and other developmental disabilities, whose problems are too much for the educational system to handle. They are shunted into a world of psychiatric services that were never designed or intended to help people with IDD.
Below are summaries and excerpts from two stories featured on Stateside, a Michigan Radio show that covers state and local issues, including struggles with the Michigan Mental Health system. To get the full emotional impact of these stories, listen to the interviews with family members and others on the Stateside Website.
“A danger to themselves or others. That’s the threshold set by Michigan law to put someone in a psychiatric hospital….”
Damiean Odisho has severe autism and is described by his father Douglas as “…a big guy with the mind of a child.” Damiean’s parents have had to call the police to protect themselves from outbursts by Damiean that ended up in physical assault or the threat of physical assault. Damiean has autism and “a host of other psychiatric and special needs diagnoses…He’s on ten different medications.”
The police department in Warren, MI, where the Odishos live, know that Damiean is autistic and has issues with aggression. In the past, under similar circumstances, they have transported him to an emergency room while his mother Malinda petitions Macomb County Community Mental Health to admit him for psychiatric hospitalization. This time, however, the police transported him to the county Juvenile Justice Center, where Damiean was booked and charged with resisting arrest. He was obviously not capable of understanding his offense or controlling his overwhelming impulses, so the court released him to his parents and instructed them to return to the emergency room where they should again request psychiatric hospitalization. That request was inevitably turned down as it had been in the past, at which point the cycle begins again.
Quoted in the article is Sarah Mohluddin, the clinical director of an autism program at the University of Michigan: “I think it’s important for people to understand just how common aggression is in autism…But children who have these concerns with aggression have limited access to outpatient providers, and even more limited access to inpatient hospitalization and psychiatric beds. And there are very few psychiatric emergency centers that really know what to do in terms of assessing these children when they are in a psychiatric emergency.”
David Pankotai, the CEO of Macomb County Community Mental Health, had this to say: “Sometimes a hospital might look at a child who’s on the autism spectrum, and think that the issues are more related to environment and behavior as opposed to a psychiatric condition.”
The experts and the people responsible for providing services seem to admit that we have a lousy system of taking care of children and adults with severe autism who may injure themselves or others; they lament that sometimes there is nothing they can do about it.
Damiean turned 17 this year and his parents biggest fear is that he will end up the adult prison system, like so many adults with mental illness. His mother is left with this thought: “He’s going to have this disability for life. And we just work around it the best that we can.”
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“To find help for her disabled daughter, Michigan mother had to leave the state”
By STATESIDE STAFF, 2/19/19
This story is about a 19-year-old young woman with severe autism who has dangerously aggressive and self-injurious behaviors. In this case, the mother found a program that worked for her daughter, but it was in another state and now she is faced with bringing her adult daughter back with no prospects of finding a suitable residential setting for her in Michigan.
From the article:
Jackie [the daughter] has a severe form of autism.
“…She received a state Medicaid waiver for in-home help when she was around four years old. But Sibley [her mother] says the family struggled to find the long-term care her daughter so desperately needed.
“‘It’s very hard to find staff, especially when there are challenging behaviors involved. Most of the people that we had helping us would quit,’ Sibley said.
“After exhausting her options in Michigan, Sibley found the Kennedy Krieger Center in Maryland, a residential facility that specializes in treating severely autistic children. After a year on the waiting list, Jackie was admitted in March 2018. Sibley says that her daughter has received ‘phenomenal’ care there.
“Kennedy Krieger is typically just a three-to-six-month program. Healthcare providers there, knowing there were few options for Jackie back home in Michigan, extended her stay to over a year.”
That extended stay at Kennedy Krieger with phenomenal care has been costly for Jackie and her family. The family’s private insurance will no longer pay for it and the family must find an alternative in Michigan. To add insult to injury, Michigan now considers Jackie a resident of Maryland and has said that she is no longer eligible for Medicaid in Michigan. That means that she will be denied a Medicaid Waiver that she has qualified for since she was 4 years old until the state agrees to take her back into Michigan’s Medicaid program. No one is paying the bills right now.
Sibley’s advice for Michigan: “Michigan needs to look at having some kind of facility — I think every state does — so that they can house these children that are not just on the spectrum, but severe cases.”
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Michigan’s obligations to people with developmental disabilities
The excuse that there is nothing appropriate for these children and adults is belied by the experience of numerous families that have found programs that work here and in other states for people with similar disabilities. That there is nothing readily available in Michigan is to some extent caused by decisions the state has made to no longer support a full range of services and residential options for this hard to serve population.
These stories are especially disturbing, because Michigan’s mental health system is obligated, in its agreements with the federal Centers for Medicare and Medicaid Services (CMS), to provide “medically necessary services” to all Medicaid-eligible people with developmental and other disabilities. That includes the social services and supports that allow people to live in community settings as well as the option of an ICF level of care. Most people with severe autism fall into the category of developmental disability and many also have intellectual disabilities.
Most families do not know that under our our state’s system of Medicaid managed care, Michigan does not allow waiting lists for services for people with disabilities who are Medicaid-eligible. But tell that to the families who are desperately struggling to find adequate services for their disabled loved ones, and they will tell you a different story of delay and denial. According to Michigan’s Medicaid Provider Manual, the mental health system “..may not deny services based solely on preset limits of the cost, amount, scope, and duration of services. Instead, determination of the need for services shall be conducted on an individualized basis.”
In other states, Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID) are one option for this hard to serve population. These are technically institutions under Medicaid law, but the word “institution” has been used in only a pejorative sense for so long that families react with fear and loathing to the prospect of “institutionalization”. The ARC Michigan, the state’s most influential DD advocacy group, had the goal of closing all institutions for many years. It has also promoted the elimination of all congregate settings (settings serving more that 3 or 4 people with DD together in one place) even while it is evident to most people that community care is grossly underfunded and of some of it of poor quality. The ARC’s Website showed a video on the history of Michigan Institutions that was produced as if it were a horror show with creepy music and newsreels of huge institutions going back as far as 90 years.
The 1980’s brought significant reforms to the system of longterm care for people with IDD, including the introduction of Medicaid waivers for Home and Community-Based Services as a companion and alternative to the highly-regulated ICF program. Our most influential disability advocacy groups nationwide have been working for years to eliminate ICFs/IID, even for very hard to serve populations. In Michigan, they have all but succeeded, although when I have brought this subject up at meetings, I often hear that there are still ICF beds in the state, but they are only whispered about and not mentioned in polite company. At the same time, families desperate for appropriate residential settings in Michigan are left with seeking out other institutional options such as hospitalization in psychiatric facilities or placements in group homes that are often not willing to take on the most severe behavioral problems.
ICFs/IID along with innovative intentional communities, group homes, and other family-initiated projects can provide a safe and non-isolating environment that both protects residents and in some cases gives more freedom to the people living there, than could ever be provided in an apartment in a community unprepared to care for people with severe autism and IDD.
Here is something to think about: Why is it that so many families report that their children have been helped and accommodated in educational programs, but there is apparently an unwillingness or inability by the adult services system to replicate that success when these same children reach adulthood?
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More blogposts and articles on this topic:
From Washington State: Because We Care -- Beyond Inclusion
Another perspective from the mother of an autistic daughter in California:
"Falling Through Cracks: When The Safety Net for Young Adults With Autism Spectrum Disorder Fails "
By EVA LOEFFLER, 2/25/19
“People with ASD and ID are hospitalized at a rate six times higher and will likely have longer psychiatric hospital stays than people without ASD. Many will not receive appropriate treatment that is tailored to their unique needs due to lack of understanding, knowledge, and training by mental health professionals. A recent study found that mental health treatments are challenging due to individuals limited communication skills, unique individual challenges, as well as the mental health field’s tendency for diagnostic overshadowing, which is the assumption to contribute behaviors to the developmental diagnosis, not necessarily the mental health diagnosis.”
by Sue Jennings, EP Magazine, December 2017
