In 2012, OAR awarded funding from the J. Ernest Brophy Memorial Fund for Autism at OAR to support a housing research study by John Maltby, M.S., at the Westchester Institute for Human Development Impact. The Institute addresses major social and health issues affecting people with disabilities and vulnerable children and develops and delivers medical, clinical, and support services to individuals, their families and caregivers throughout Westchester County and the Lower Hudson Valley in New York.
The goal of Maltby’s project was to develop a printed housing resource guide for people with autism spectrum disorder and/or intellectual and developmental disorders (ASD-I/DD) and their families that would provide housing information sources and information concerning entitlements, eligibilities, and individualized living options. The guide would facilitate arranging housing for people with ASD-I/DD and would foster empowerment through increased knowledge. The product would support informed decision making and self-determination and self-direction in housing.
In addition to the guide, he and his team planned to develop a network of professionals and families who would be able to help them create the guide and to implement the options it described, building a knowledge and skill base for people with ASD-I/DD seeking housing in the area. That group became a learning community, which is still in existence.
The guide is now available online.
Results
Creating the guide and developing the learning community resulted in:
- Better-informed families who are better able to make decisions about housing for the person with ASD-I/DD. As part of the learning community, they can find out about and understand the options they have. The discussion among families, housing providers, funders, and regulators has opened up to how more individualized housing can be created. The learning community began with 20 people and has grown to 70 families and 50 professionals. A weekday conference held by the Institute attracted 95 attendees.
- Dissemination of the Housing Resource Guide. The guide sets out how a person with ASD-I/DD can obtain support from public and private sources and provides the groundwork for a housing plan. As word has spread about the guide, the Institute has realized how great the demand is for a centralized source of basic housing information. While the guide is not exhaustive, it is a good first step for many families and professionals.
- Plans for an online version of the guide. The Institute created an online version of the guide, which can be updated when the information changes, and as Institute staff learns more about new options. The online version will invite users to provide feedback via a survey that will assess their understanding of housing issues as they begin the guide and then provide them with opportunities to contribute feedback based on their own experiences in using its information. This feedback will enable the Institute to incorporate new suggestions, ensure that the information provided in the guide is relevant and accurate, and create a link between the Institute and the individual user of the guide. Members of the learning community will help the Institute keep the online version up to date.
- A need for continuation of the learning community. In addition to the family and provider agency members of the learning community, professionals from other fields who see the potential of families and individuals to purchase their services have joined the community.
- Assistance for three families. One family is creating a housing plan, one is in the middle of developing a budget, and one has just begun the process after a much-delayed start. The process also helped the Institute service coordination team to understand the issues that confronted the individuals and families they worked for and helped them to learn about a broader array of services and public and private resources that they could mobilize in their work with other families.
- The involvement of professionals. In addition to the families, the learning community attracted professionals from the ASD-I/DD provider community. In the last year, provider agencies, the state disabilities office, the regional vocational rehabilitation agency, and the county’s community health department have asked the Institute to provide training in creating housing support to over 100 professionals
Lessons Learned
As the project unfolded, the research team learned a number of lessons:
- Families and individuals with ASD/I/DD who must navigate the housing system must understand the role of federal, state, and local agencies in creating housing in order to be successful as must the practitioners and advocates who work with those families and individuals.
- There is a need for more affordable, accessible housing and those who need it must advocate for it.
- For families and individuals to navigate the housing system, they need not only knowledge of and familiarity with the nature of low-income and disability housing, but also access to a network of professional support services that are not directly related to ASD or other I/DD, including bankers, realtors, attorneys, and contractors, for example.
While the Institute team focused on a specific area of New York State, the results of its projects and the lessons learned have broad application for families, individuals with autism spectrum disorder, practitioners, and advocates across the country.
