Autism’s crisis in care

(Cross-posted from The SAGE Crossing Foundation Blog)

Many young adults with autism are more likely to spend their days watching TV and playing video games than participating in life skills or job programs.

It’s not that these people or their parents or guardians prefer that they rely on TV and video games.  It’s that the programs and services they really need aren’t available for them.

A crisis in care for adults with autism and other developmental disabilities is upon us, and it involves all of society.  It’s a crisis caused by a rapidly rising number of autistic people who need services, places to live, and employment, and by a society that isn’t prepared to provide those things at anywhere near the level that is needed.

“As it stands today, Massachusetts struggles to serve only a fraction of children and adults living with disabilities…,” Julie Fitzpatrick and Daniel Shannon of the Massachusetts Developmental Disabilities Council wrote recently in The Boston Globe.

The result is not only the loss of quality of life for those directly involved; there is also a huge cost to society in terms of lost productivity among those who bear the burden of providing the care that society doesn’t provide.

When a single mother of an autistic 22-year-old man is forced to quit her job in order to provide full-time care for him because she can’t obtain residential or other services from the state, she’s not the only person who loses out.  Society loses her productivity.  If she then is forced to rely on food stamps or other forms of assistance, society loses further.

If her son, who has no support programs, exhibits patterns of behavior that put either himself or others in danger, there are further costs to society.  The multiplier effects of these types of problems, when thousands of people are in the same position, are incalculable. 

It is a crisis that only promises to get worse if solutions are not found soon.  Consider some data involving autism alone that SAGE has been working to assemble:

•  Some 220,000 children with autism are expected to reach adulthood in next decade in the nation, and close to 6,000 of those people will be living in Massachusetts. (SAGE is developing a report with these projections and will provide a link to the report in a forthcoming blog post.)
• There is already a waiting list for residential and other services  in Massachusetts among people with intellectual disabilities that has been estimated at 1,000, although that figure may greatly understate the problem.  Moreover, people who have what the state defines as intellectual disabilities comprise only a part of the total number of people with developmental disabilities, which includes autism.
• It has been estimated that there are fewer than 30 residential providers around the country specializing in homes for autistic adults, according to the Foundation for Autism Support and Training.
• 80 percent of adults with autism are either underemployed or unemployed, the Foundation for Autism Support and Training reports.  In addition, 80 percent of adults with autism are living with aging parents.

There are a number of reasons why society has been unable to deal with the rising number of people with autism who need help.  It’s important to understand these reasons if we are ever to be able to find a solution or solutions to the problem.

First, in Massachusetts, as in most other states, special education services for children with autism, which are provided by local school districts, generally end when those children reach the age of 22.  Those 22-year-olds then enter the world of adult-based services, which may not be there for them. 

In Massachusetts, the Department of Developmental Services is authorized by statute only to serve people with “intellectual disabilities.”  The Department defines intellectual disability as involving “significant limitations both in intellectual functioning and in adaptive behavior.”

The “intellectual functioning” part of the DDS definition is where the problem arises for many people with autism.  DDS relies here largely on a clinical authority, the American Association of Intellectual and Developmental Disabilities, which has found that a limitation in intellectual functioning can be indicated by an IQ score as high as 75.

The problem for many people with autism is that while they may have severe limitations in adaptive behavior, sometimes requiring 24-hour supervision, their IQs may often be higher than 75.  As a result, an untold number of adults with severe cognitive disabilities do not meet the DDS definition of having an intellectual disability, and they find that they are suddenly ineligible for services of any kind.  Yet, these are “adults” who, if left unattended, might wander outside, without looking, right into oncoming traffic or become easy prey for sexual predators.

People with autism have a unique set of behavioral and cognitive disabilities.  These issues often make them virtually unemployable.  Sometimes, it is repetitive rocking behaviors, the use of inappropriate speech or atypical facial expressions, movements or gestures and tones of voice.  Many people with autism also have a number of related medical conditions, including seizure disorders, sensory processing problems, and pica, a tendency to eat things that are not food.

The good news is that people with autism respond to and are helped by treatment that includes such things as speech/language therapy, occupational and physical therapy, and sensory integration therapy.  They also benefit from occupational and life skills programs.  But what happens if these services and programs are not provided?

Last year, at a public hearing in Worcester, DDS officials heard from a parade of parents of young autistic adults who had fallen through the cracks in the system because their IQs measured just above the DDS cut-off point.  Almost all of the parents described the sense of helplessness, isolation, and depression that their children encountered after their special education, employment, life skills, and other programs came to an end.

Most of those parents were at their wits’ end as well.  Many had or were facing the prospect of having to quit their jobs in order to care for or at least provide full-time supervision for their children.

In a report issued in 2009, SAGE maintained that “given that the tidal wave of adult autism is already clearly visible rushing toward us from the horizon, it is time for us to prepare for its landing, and begin to develop new models of care for this population.”  The report called for a national discussion of this issue.

That national discussion has not yet taken place.  But there have been some promising developments in recent years.  As Chicago Magazine recently reported, many parents and volunteers are acting on their own to create residential and other programs for their children with autism.

The magazine quoted Katy Neas, a Washington, D.C.-based disability rights lobbyist for the charity Easter Seals, as saying that it is these parents and volunteers who will ultimately change the current system of care for developmentally disabled adults. “It is because of them that we are even as far along as a country as we are,” Neas said.

SAGE has been involved in this volunteer movement as well and has been working since 2007 to develop farm-based programs and activities for autistic adults. (We’ll say more about some successful farm-based programs in a coming blog post on this site.)

But volunteer-created programs cannot begin to fill the entire need.  The effort to expand the effectiveness and scope of governmental programs and services is ongoing.  In Massachusetts, for instance, organizations such as the Disability Law Center and the Asperger’s Association of New England are pushing for legislation this year that would expand DDS services and eligibility standards to include people with autism and other developmental disabilities (HD 2945 and SD 777).

We hope this effort continues to pick up steam, and we hope to be a part of it.