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A Call to Action: Addressing the Inequality of Adult Autism Services
September 21, 2009
A Call to Action: Addressing the Inequality of Adult Autism Services
By Steve Muller
Imagine a national educational system that provided comprehensive and complete opportunities for one child, but another child living just a few miles away, struggling to overcome the same developmental disability, was denied access to any educational supports.
Would our nation be outraged? Would it spur a national debate on how to remedy this inequity?
Fortunately, our children benefit from a national framework of educational standards. But, sadly, there is no similar federal initiative for adult services. What is available for an adult with autism varies greatly from state to state, county to county and even city to city. Following are two stories of adults on the autism spectrum-one who received services and support, and the other who did not-that resulted in very different endings.
John's Story
"John" aged out of the educational system only to find that nothing existed for him after graduation. Long waiting lists for scarce public resources meant he didn't have any options. There were no residential providers to help him find room-mates to share costs, locate a suitable home or apartment, access food stamps or public housing supports, sign up for utilities, purchase furniture and household goods, balance a checkbook, purchase groceries, facilitate problem solving with friends and neighbors, or attend integrated community events.
There were no employment programs to help him transfer skills learned in his school to the workforce. No job coach to help him navigate the "help wanted" ads. There was no one to help him negotiate with the handful of employers in his community that were still hiring. There was no subsidized transportation system to help him get to and from work.
His family watched as John became more isolated. Those typically developing students that befriended him in school left for college. When he ventured outside he occasionally ran with a questionable crowd, unaware that he was the brunt of their jokes. Without much structure, meaningful work or a network of supports, John was hospitalized several times. Medications helped, but his family was unable to convince John to take them. Through a series of missteps, including an unfortunate event of "exploration" with a young boy in a men's room, John found himself with a police record. The frequency and intensity of his physical aggression escalated until he was incarcerated.
After getting out of jail, John couldn't find a place to sleep. He split his time living on the streets and in a homeless shelter. His cause of death was unknown, yet the few who tried to help John questioned whether it was suicide.
Jack's Story
"Jack" had a team of professionals working on his transition out of high school years before he graduated. He met with trained professionals who helped him meet prospective room-mates, matching his age, interests and skills. After considering several houses and an apartment, he found a secure a home in a safe neighborhood close to a grocery store and bus route. Jack had a paid assistant to help him adjust to living in his home. This aide provided 24-hour supports initially, and as Jack grew more confident and skilled, this support was reduced to a few hours a day.
Jack was introduced to a local civic organization where he participates weekly and volunteers at their annual fundraiser. His club is building a new playground for a neighborhood park. Some of the men in the club invited Jack to join their bowling league. Jack also passed his test to obtain a driver's license learner's permit. He practices regularly on quiet streets but says it is hard because "there are a lot of decisions to make at the same time."
A job coach was able to work with a local employer to find incentives that encouraged employment for people with disabilities. Jack was hired and makes less than minimum wage to account for his productivity level. He may be slower than his non-disabled peers, but his supervisor praises him for his attention to detail. He doesn't miss work and his job coach provides regular intervention when Jack encounters problems with his co-workers. The paycheck helps supplement the housing subsidy and food stamps, and he is saving money for a new TV. Jack's part-time employment doesn't keep him busy all day, so he volunteers two days a week at the animal shelter, walking dogs and cleaning the pens. Jack's aide attended the volunteer training program with Jack.
Jack still faces daily struggles due to his autism. At times he becomes confused and frustrated. Sometimes these frustrations result in behaviors that impair his ability to complete daily activities or to successfully integrate into his community. But Jack has the advantage of a caring interdisciplinary team that meets frequently and identifies creative solutions to help him better understand his surroundings.
Few Options for Adults
The few examples of quality services described in Jack's story above exist like a bountiful oasis in a desert wasteland. The reality is that adult "options" for many Americans look more like John's story. Long waiting lists to access funding or service providers can result in institutionalization, hospitalization, homelessness and incarceration. Families quickly realize they must adjust their expectations from fighting for additional hours of therapy to trying to find any assistance for basic supports for their adult child.
Parents of children face decisions on where to live based on their child's ability to access a quality education. Parents of adults often face similar challenges. Do they uproot the whole family to move to a community where their adult child can transition into a quality program? This question often comes at a more difficult time as parents with adult children are more established in careers, making it more challenging to start over in a new community. And a move is no guarantee that their adult child will not face lengthy waiting lists.
We face a situation where there are the "haves" and the "have nots." What separates the Johns from the Jacks depends on:
•· The vocal support and coordinated efforts of an active regional advocacy group;
•· The foresight of government leaders to invest in and create support options;
•· The willingness of community providers to create and grow support systems;
•· The financial investment of philanthropic community leaders; and
•· The economic resources available to a community, including public and private funding.
Recommendations for Individuals and Advocates
What are individuals and their advocates to do?
•· Get to know your adult system early. How early? It can never be too early. Find people who can help you understand this system. The "system" can be unique to each state, county or community. Family members that have successfully accessed services are often willing to help. In some situations there are formal representatives through state or local government programs. Often school professionals are connected with these adult systems. Contact other disability groups. They may have systems that also meet the needs of adults with autism.
•· Submit multiple applications for admission to service providers. You may not be ready for adult placement today, but increase your chances by getting on a list early and being on multiple lists. It is better that you have a chance to say no when offered an opening than to wait too long and not have an option.
•· Get active. Find a network of advocates that you can join to make your voice heard. In tough economic times there is great pressure to reduce services for this growing population. There is strength in numbers. Without a national standard state and local governments are forced to consider all options to reign in financial shortfalls. Don't assume that something available today will be there tomorrow.
•· Consider starting a program in your community. There is something all providers have in common-each one was started when a group of active, concerned citizens joined together to make a difference. If nothing exists in your community, consider aligning with others to get the process started.
Finally, and most importantly, it is time we begin a new debate. We are grateful for the leaders in our past that successfully convinced key decision-makers that our public schools can and should provide equal access to education for children with special needs. It is now time for a new discussion. We must raise awareness of a national standard for meaningful and appropriate supports for adults with autism to successfully live and work in our communities. It is time we erase the dramatic inconsistencies that exist across our country, and establish opportunities for men and women regardless of their legal state of residency.
About The Homestead
The Homestead is a private, non-profit organization that provides innovative solutions for children and adults with autism, their families and allied professionals. Services are provided in the community, in homes and in a unique agriculture based campus program. Autism is a neurological disorder that severely hinders the way information is gathered and processed causing problems in communication, learning and social skills. It occurs in roughly 1 of every 150 births.
For more information, contact
Steve Muller
Executive Director
1625 Adventureland Dr., Suite B
Altoona, IA 50009
p515.967.4369
f888.228.8476
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