Jan Randall, Seekonk, MA
“Transition.” The word may not strike fear into the hearts of men but it fills those of us with sons and daughters on the Autism spectrum, who are going to be “turning 22”, with a serious case of apprehension. I am one of those very apprehensive parents.
Over the years I have thought off and on about what transition from school would be like and what it would mean for my son Andrew. A few years ago I even went to a two day training on developing work programs for adults with Autism at the TEACCH Center in North Carolina.
Now though, with Andrew’s transition looming on the horizon (October 2007), I am nervous and skeptical about what lies ahead. I also never imagined that the options for Andrew to go out and work, as well as for him to continue to grow and learn, would be so seriously limited.
For the uninitiated, if your son or daughter is receiving services from DMR (The Massachusetts Dept. of Mental Retardation), they will be evaluated around the time of their 18th birthday to see if they will qualify for services beyond the age of 18. If they qualify, you are one of the lucky ones because if they don’t, the support options and services that are available when they leave school are extremely limited. For those who do qualify for DMR, it is likely that your son or daughter will also be staying in school until the day before they turn 22. The day before their twenty-second birthday is officially their last day of school. In the year or two before that time, it is important to do your homework and look at Adult Service agencies (aka Adult Vocational/Day Programs). It is also important to know that, unlike school, adult services are NOT mandated. Think of adult services as more of a gift. You’ll likely get something but there isn’t any state or federal regulations stating the minimum of what your son or daughter must receive.
Shortly before Andrew turned 21, I started visiting adult service agencies both inside and outside of our family’s designated service area. Your “designated area” is based on the town where you live, for example if you live in Dartmouth, the Greater New Bedford Area would be your service area. If you live in Seekonk, Taunton/Attleboro is your service area.
One of the first things that I learned was that Andrew would not get transportation to a day program if I chose a program outside our area. It didn’t matter if the program was closer to our home: if it was outside our designated area I would have to drive him back and forth every single day. Because of where we live, there are at least 3 or 4 programs that are OUTSIDE our area that are anywhere from 10 to 20 minutes from our home. The closest program IN our area is 25 minutes away. I think this is totally unfair and a bit silly considering today’s gas prices, but DMR and the Service agencies want to get as many adults on a van as possible so they can transport them together. Depending on where you live, this can make for a very long ride both in the morning and afternoon. Even though I understand that transportation is a problem, I felt it was important to look at as many of the available options as I possibly could. I knew it was important for me to be well-informed about what kinds of programs existed for adults with disabilities.
Through the process of visiting these adult programs, I have met many people–from the program directors to the staff. I found that the vast majority of them were very nice and showed sincere care about the people they serve. However, what concerned me most was the lack of knowledge about Autism and what young adults with Autism can achieve when given the proper supports. This brought me to the conclusion that, although the people at the adult programs are quite caring, their knowledge (generally speaking) about adults with Autism is about what the public school system’s knowledge was like back in 1990. After visiting a number of adult programs, I feel like I am starting from scratch, trying to educate those in control about what is best for my son. I never imagined that at this stage in my life or in his that we would essentially be starting all over again!
During my search I also came to the conclusion that at this time, no program exists that even comes close to the providing the same amount of opportunities for work (both intern and volunteer), therapy, and social learning that Andrew’s school (the South Coast Collaborative Bridge program) has provided for him. As of this writing I still don’t know where Andrew will go or what he will do when he turns 22 in a few short months.
I do understand that it really isn’t the fault of the adult service agencies that they aren’t on the cutting edge of Autism. Over the last 2 decades there has not been much of a need for adult programs for people with Autism–because there were so few adults with Autism.
Today that has drastically changed. My son, along with hundreds of others, is on the cusp of the “next generation”, the generation where the numbers of children being diagnosed with Autism started to slowly and steadily rise. This “next generation” now in their teens, is also the generation of students who had the advantages of more knowledge about Autism, therefore they received better education and therapy than prior generations. Although many of these young adults are very challenged by their Autism, many like my son Andrew are fully capable of working and volunteering in the community, IF they are given staff people who are well educated about Autism, the right environment to work in, and the necessary supports.
As I said, I have been looking for a place that will allow Andrew to work, as well as getting therapies that are vital to his success. This is why when I learned about the Gottschall Autism Center, I was so very excited about what will be available for young adults with Autism in the very near future.
The Gottschall Autism Center will be a place where knowledge about adults with Autism will be their defining focus. It would be the place that I would choose for Andrew, if it was going be ready for him this October. Sadly it isn’t. But soon, parents will have the option of having their son or daughter attend the Gottschall Autism Center, where there will be real expertise in supporting adults with Autism. It will be a place where adults with Autism will be able to work and grow and thrive.
What a wonderful thing that will be…
Anne McElroy Dachel, Chippewa Falls, WI
As a member of A-CHAMP (Advocates for Children’s Health Affected by Mercury Poisoning) and of the National Autism Association, I’ve been involved as an autism advocate for the last several years. I’ve been to Washington, D.C. twice trying to make my representatives aware of the autism epidemic and the desperate need for services. This is a health care emergency happening all around us, yet our leaders have closed their eyes to the disaster. When polio struck one in 3,000 Americans at the height of the epidemic in the 1950s, it was a national crisis. Everyone focused on it. Autism affects one in 150 children, and we simply pretend it isn’t happening.
With eighty per cent of autistic-Americans under the age of 18, the dramatic impact of this tragedy will be felt by taxpayers in the coming years when these autistic children become adults.
Research by Michael Ganz at Harvard makes a chilling prediction of the future cost to our society. Ganz writes, “It can cost about $3.2 million to take care of an autistic person over his or her lifetime. Caring for all people with autism over their lifetimes costs an estimated $35 billion per year.” His findings are felt by others to be a gross underestimate of the eventual autism price tag.
Read Autism Has High Costs to U.S. Society
Other figures from the advocacy organization, Lifespire in New York estimate that lifetime care will cost $10 million per autistic individual. View document.
Within the next 5 to 10 years, these children will be going on Social Security Disability for life with autism. No one seems aware of the impact they will be having on the taxpayers. While we’ve heard for years about the effect that the baby boom generation will have on Social Security, we’ve completely ignored the disabled generation with autism. My son John is 20 and he has Asperger’s Syndrome. When he turned 18, we applied for Social Security for him and after one rejection, he was given coverage. The reaction of the woman working at the Social Security office was very telling. She remarked to my husband that she had been working there for years and was now seeing young people applying for disability because of autism. She couldn’t understand it. Where were they coming from? My husband told her to get used to it; John is the tip of a huge iceberg.
The states are totally unprepared for caring for thousands and thousands of autistic children filling our schools. Here in Wisconsin, we hear about an early childhood program for those with autism. Meanwhile for the older children, there is nothing. Wisconsin Medicaid will not cover speech therapy for those who are high functioning or have Asperger’s Syndrome. John was fortunate that his therapy was covered by our health plan when he was younger, but when he turned 18, he lost coverage and Medicaid refused to help him. Several dozen other young adults with autism in the area that we know had the same experience. Medicaid will not cover therapy for them.
Over the last two years, I’ve tried everything to find vocational help for my son. I’ve contacted state and county agencies that work with the disabled and found nothing for individuals with autism. I’ve been to countless meetings with professionals who work with the disabled. I’ve found universally that there is a pathetic lack of autism training, and only minimal experience with adults who have autism.
Last October 25th, a group of us parents met with the WI HHS Secretary Helene Nelson in Eau Claire. We invited her to come so that we could inform her that young adults with autism/Asperger’s Syndrome have absolutely nothing in terms of services, programs, or funding. Sec. Nelson seems to have been totally in the dark about many things involving autism. We informed her how prevalent it is, how limiting it can be, and how little training or autism experience there is among people working with the disabled. What really seemed to get her attention was the fact that the dozen young people in the room with Asperger’s Syndrome were all on Social Security Disability.
She left, promising us nothing, but amazingly several months later a new program was started with a $62,000 grant. It focuses mainly on social activities, with a long term goal of EMPLOYMENT for the young men. (There are no girls.) This is what John got in his speech therapy until he was 18, and while it’s beneficial to offer social interaction, this hardly a way to make these young adults productive.
This is all there is for individuals like my son. It’s a scary forecast for the future. Our government refuses to even acknowledge this disaster. If there are weak programs and minimal training, if we pretend this isn’t happening, these kids will keep aging out, draining scarce resources, and they’ll become the enemy within. They will eventually be an enormous burden on the taxpayers and the retiring baby boomers who paid into Social Security all their working lives, will see hundreds of thousands of young adults who never paid into Social Security, draining the already limited funds.
The words of Laura Bono of the National Autism Association are a grim forecast for the future: “As those children reach adulthood, the U.S. is ill-equipped to care for them. Not only do we not have enough services for adults now, the light at the end of the tunnel is a train. Frankly, we don’t know what we’re going to do.”
We need to seriously recognize this disaster and the economic impact it will have on the U.S. We need move mountains to make these young people productive. We need to be motivated by compassion for those with autism. They deserve to reach their full potential and not be ignored and merely shoved aside.
