The question that keeps ASD parents awake at night: “Where will he/she live when I am no longer able to provide a home?” Questions and emotions swirl around whenever housing is the topic of any discussion: “It’s scary.” “It’s complicated.” “There are so many factors to consider.” “Maybe someone else will figure this out for me.” “What’s the cost?” “What is appropriate for your son may not work for my daughter.” “How do I assess the supports offered by the organizations/support systems intended to provide services?”
The Objective: Find the Best Possible Housing for Your Adult with ASD
But how? The approach of one small group of determined, every-day people, provides one possible answer. This is not a one-size-fits-all story, but the account of finding appropriate housing for a segment of the ASD population. The type of housing that will be discussed is for those who can live independently, with less restrictive supports.
The Adult Issues North chapter of ASPEN (Asperger’s Syndrome Education Network), located in Bergen County, New Jersey has been in existence for 14 years. When we began, we identified three over-arching concerns: social skills, jobs and housing. Initially, we focused on social skills and jobs, with housing taking a back seat. We judged that the housing issue was just too big for us; too complex for a small group.
In 2000, we enlisted West Bergen Mental Healthcare to facilitate a therapeutic social skills program for our Asperger’s adults. In 2004, we came back to them with our jobs program proposal. They declined, saying employment was not their expertise. Instead, they offered to help us with housing. This marked our first foray into housing advocacy: demonstrating the need. We sponsored a meeting, where West Bergen described their tentative plan. The room was packed with potential tenants and their relatives. Our early contribution to this effort was to recommend a HUD consultant, who we found through research and networking. After a lengthy, arduous effort, the final result was a ten-unit apartment complex that opened this spring for those with Asperger’s Syndrome.
Getting More Involved
The catalyst for becoming more involved in housing advocacy occurred in March 2009, with a half-day Affordable Housing Forum. Our panel of experts included:
- A county official who described government programs
- A developer who spoke of her company’s involvement in meeting the affordable housing need
- A mental health CEO who talked about a new group home, and
- The mayor of Allendale, NJ who showed us pictures of the newly opened complex for 10 developmentally disabled adults
The Housing Forum achieved three results:
- A better educated and informed membership
- An inspired individual who committed to approach her municipality
- The genesis of a chapter housing committee
Our housing committee is the lynch pin of our affordable housing advocacy efforts. The primary focus is education (first the committee and then our members) and advocacy. Our six members have a variety of talents and interests, creating a multi-dimensional approach to the problem.
We began by educating ourselves. We discussed topics and researched answers to questions we had. The research took many forms: reading newspaper articles, attending meetings, conducting internet searches, and discussions with local and county officials.
A great deal of time was spent on research and discussion, as we created several versions of ideal settings. Gradually, we developed an approach to advocate for affordable housing at the local level, based on the knowledge we had gained.
Throughout, the talents and interests of our committee members played a vital role. For example, our computer expert found valuable data online, while our marketing person developed a presentation suitable for meetings with planning boards and mayors. Data was important for a number of reasons: we needed to understand how housing worked in New Jersey and the current political environment. We also needed to know which municipalities had available funds designated for affordable housing.
A model presentation was developed. It contained a great deal of information related to affordable housing. This document was designed as a template that could be modified to suit the particular situation in a specific town.
Simultaneously, we invited knowledgeable individuals to speak about housing at several chapter meetings to broaden and deepen our members’ knowledge. The information sparked additional questions and areas to pursue for the housing committee.
Our approach crystallized slowly, as committee members tested our model presentation, and learned about potential pitfalls.
A Summary of Our Successful Approach
Become as knowledgeable as possible:
- Make an assessment of what is important for the person in need of housing, and the degree of possible flexibility. This will govern the next step.
- Research availability of appropriate options in your chosen area.
- Submit your name to any and all housing lists for that area. Talk to your local municipality for guidance.
If there are no suitable options, determine if your chosen area has funds available to build affordable housing. If the answer is yes:
- Gather as many community members who are invested in the needs of adults with ASD in the chosen municipality
- Form alliances with individuals or organizations that have goals similar to yours.* Educate those who want to participate but don’t have the background
- Tailor the model presentation to your situation
- Approach potentially receptive members of your local government. Someone on the council may have a disabled person in their family or have previously shown an inclination to support affordable housing
- Provide receptive officials with data supporting your objective
- Request a formal meeting in writing. A written document becomes part of a municipal record; the officials are required to respond.
- Be persistent and vigilant.
- Keep track of all written responses from the municipality.
- Make your presentation, accompanied by as many of your tax paying friends and neighbors as you can muster. Or, coordinate a presentation that includes community members, tax paying friends, neighbors and those invested in diversifying the community.
- Be persistent. One presentation will not accomplish your objective, but it’s a start. Let your audience know that this is a process and it will require a commitment to additional meetings.
- Follow up. Find out what else the decision makers need from you. Provide it promptly.
- Be persistent.
- Communicate throughout the process so that all involved are aware of new developments.
If the above sounds like a grind; keep in mind that it has proven successful. And success is very exciting!
Before you start, remember your objective: to find the best possible housing for your ASD adult.
The first issue is to overcome inertia. The best way to confront this is to become better informed about affordable housing options in your area. The second step is to form a network with others who have similar goals. With information and allies, much is possible. Is it easy? No. Can it succeed? Yes!
Securing appropriate housing is a slow process and analyzing potential options can be complex and confusing. Remember that information is your ally. Your network and alliances are key to broadening your knowledge. Persistence and diligence are vital to success.
The ultimate success is securing that spot for your ASD adult, but success comes in stages. For our small group of dedicated, determined everyday people, we have achieved the following:
- One municipality is fully committed to building affordable housing for the disabled, with a developer and building site selected.
- Another town has the site and is evaluating potential developers.
- A third is searching for the appropriate building to rehabilitate, given their financial restraints.
The housing committee achieved another success: a recent chapter meeting showcased another panel of experts – our own Housing committee. Committee members described the history, as well as the current status of affordable housing in NJ. The person who committed to housing advocacy at our Housing Forum described the progress being made in her town – they are ready to build, pending permit approvals. And we answered many, many questions. Quite a feat for a small group of dedicated, determined everyday people.
Separate from the above, and due in large part to the education and advocacy provided by our Housing Committee, six of our members’ ASD adults have found appropriate housing in the past six months.
* The BCUW/Madeline Partnership (see their Ad below) is one such organization.
For more information about the Adult Issues North chapter of ASPEN, please contact Mary Meyer at AdultAS@aspennj.org or by phone at 201-825-3286. You may also visit http://aspennj.org/aspen-chapters/adult-issues-chapters/north-jersey-adult-issues.