In 2009, I was greatly concerned about what the future held for my 18-year-old son. He was clearly a candidate for residential services as an adult, but his support needs were so intensive that I was concerned about the ability of the system to meet them. I organized a group of families to begin meeting regularly to consider the problem of where their children with autism would live as adults. While school children with autism are entitled to a “free and appropriate” public education in the United States, there are few entitlements in the adult world. In Massachusetts, state services are “subject to appropriation by the legislature,” meaning many individuals might not receive residential supports at all, while others might not receive sufficient resources. We were rightly concerned about both the availability of services and their adequacy.

We all had children who attended the same school for students with autism; however, as word of the meetings spread, families from outside the school asked to participate. Originally, we intended to create a house or cluster of houses for our children. However, as we discussed our visions and our children, it became clear that a variety of housing models would be necessary to meet the range of needs and resources represented. Nonetheless, we recognized that everyone needed to do the same research, as everyone needed to know the same information about service providers, government subsidies, programs and regulations.

In April of 2010, Autism Housing Pathways incorporated as a non-profit organization. Its mission statement reads, in part:

Autism Housing Pathways (AHP) was created to provide information, support and resources for families who seek to create secure, supported housing for their adult children with disabilities. Autism Housing Pathways seeks to foster education and awareness and disseminate information about the creation of self-directed housing for individuals with autism and other developmental disabilities; to promote and support the formation and maintenance of such housing; and to assist families in creating self-directed housing for their adult children that supports their residential, recreational and community needs.  

AHP is a grassroots organization. It is comprised of members who pay a nominal fee to join and for annual membership. In essence, it aims to empower families both by sharing information and by giving families a venue to reach out to one another without the encumbrance of confidentiality requirements that hinder the ability of state agencies and service providers to share families’ contact information.

Our current outreach efforts include a short presentation on housing that AHP members deliver to parent groups around the state, as well as a website, Facebook page and Yahoo group. In 2012, AHP will launch a daylong workshop on housing that it hopes to offer four times a year, each time in a different area of Massachusetts. The workshop curriculum will be informed by the results of a statewide survey of the housing needs and resources of individuals and families affected by autism. The survey is underway, and will be completed by the spring of 2012.

In addition to its work with families, AHP is reaching out to service providers to increase awareness of the housing needs of individuals with autism. Many service providers have limited experience with autism. Since Medicaid does not reimburse service providers for training costs, training for direct support professionals is frequently minimal. We have just received a grant to produce a pilot staff training video. The video will cover the topic of reinforcement and be 10-15 minutes in length. To measure the effectiveness of the video, AHP will pilot it with both direct support professionals and GED students in the city of Boston. (The GED, which is equivalent to a high school diploma, is the threshold credential for direct support professionals.) Participants will take a pre-test, view the video, take a post-test, and complete a questionnaire about their experience. Using the pilot video as proof of concept, AHP hopes to obtain funding to make a full 15-20 hours of video that will be available for free via the Internet.

AHP is striving to familiarize public officials with the magnitude of the challenge ahead. More than 12,000 school children in Massachusetts have a diagnosis of autism. If the past is any indication, only about 10% of those students will be employed as adults, and thus able to afford market rate housing. Only about 7% will receive full time residential services through the Department of Developmental Services when they turn 22. The implication is that at least 10,000 individuals with autism will need affordable housing over the next 20 years, and many of them may need supportive services as well.

We are also reaching out to organizations in other states with missions similar to our own, hoping that we can collaborate and learn from one another. Groups with which we are in conversation include Aging with Autism, the Autistic Global Initiative, ARCHway, and the Southwest Autism Research & Resource Center.

In the long term, AHP hopes to develop a matrix of housing models that covers the range of families’ needs and resources, so that families coming to us can readily identify a model and the path to get there. Some AHP members are training in the techniques of person-centered planning, so that AHP will be able to offer person-centered planning services, further helping families to chart their course. Our motto summarizes our goal: “Building roads to home.”

In reality, we recognize that there will be holes in any matrix of housing models, where available resources are insufficient to meet the need. In such instances, we intend to shine a light on the problem, hoping that the public, private and philanthropic sectors will step up to fill the gap. But we will not allow our children to fade away into the dark.

Catherine Boyle
President
Autism Housing Pathways
2011