Over the past several months, MFOFC explored alternatives to conventional models of long-term living arrangements for people with disabilities through the Housing Webinar Series that recently concluded.

We shared stories about families who have successfully created living arrangements or housing through the process of person-centered planning for their children. 

Here’s what we learned.

• It is indeed possible to create accessible, affordable, inclusive and person-centered housing for people with disabilities. Every living arrangement is different – as unique as the person for whom it’s created, regardless of the extent of disability.
• Families that network proactively and leverage community connections experience success in finding the help they need, including direct support providers. Long-term relationships with direct support providers and utilizing supported decision-making go a long way in maintaining the quality of life in a person-centered plan.
• People with disabilities living in person-centered arrangements have been able to retain their choices and ability to make decisions to a higher degree during the COVID-19 pandemic, compared to those living in congregate settings.

We see many examples of person-centered planning and housing outside Massachusetts and internationally – yet, the dearth of success stories in Massachusetts suggests there is much more work to be done to create affordable, accessible homes where people with disabilities can live independently.

The message is clear: Parents must take the lead.

You have the power to envision where adult children will live, and you can make it a reality with sustained effort, resilience, and creativity. Even though the future seems uncertain amidst this pandemic, there are steps you can take now to begin the planning process toward creating a person-centered living arrangement for your child.

Here’s what you can do now to get started on a person-centered plan:

1.       Articulate the ‘Vision’ for your child’s future

Like any great endeavor, your child’s person-centered plan needs a vision to both anchor and guide the process. Parent Sandy Heller offers a great example of how creating a vision helped her son Craig’s life choices.

When Craig was diagnosed with Down Syndrome, Sandy was understandably concerned about what the future would hold, but she was adamant that his life would be as typical as anyone else’s. Sandy began by developing a vision for Craig’s future when he was in second grade, actively involving Craig, incorporating his goals as he grew older and putting their vision to paper. Craig’s person-centered plan included his vision to work and live on his own. Sandy utilized his school’s transition planning process and a focused IEP to help him learn to spend time with others besides family, explore different jobs as well as develop life skills such as cooking and cleaning.

Today, 33-year old Craig is self-sufficient, working since he was 16 years old, living in a home he shares with a roommate and receiving support as needed. The person-centered plan has also helped Craig build on his interests in photography and music, including attending events such as concerts in the pre-COVID world.

Practical tip: When creating a vision for your child’s future, begin the process as early as you can. Be sure to include the non-negotiables in your vision. As much as possible, involve friends, family and members from the community who know your child well, so they can contribute to the vision, too. Charting the LifeCourse is a framework with tools that can help with this process.

2.       Proactively build your support network and connections

An effective support circle can contribute to meaningful life in a variety of ways – from helping your child develop skills or receive support in daily life to sharing resources or even finding a roommate for a shared living arrangement. Take the time to build your support circle, which can consist of family members, friends, and individuals you may know from other walks of life. 

“Every person you meet, whether you happen to like them or not, is a potential ally on the path to a person-centered life,” says parent and practitioner Dr. Laurel Peltier, whose 27-year old son Elijah has autism and intellectual impairments. Laurel’s family’s willingness to introduce Elijah, right from his young age, to people in the community, sharing his story, his strengths, challenges and dreams has helped them find support from different sources over the years. For example, their church helped them locate and convert an old farm house to the shared living space where Elijah now resides. And Elijah’s shared living provider is a para educator he has known since middle school. “Families that are successful are the people who know where they are headed long-term, who talk specifically about it and who tell everyone,” says Laurel.

Practical tip: Connect with regional advocacy and support groups to get to know other families. Your support circle may also include an agency that shares values and philosophy compatible with your own, and a successful relationship with an agency can in turn lead you to the right direct support provider for your child. And do maintain contact with the coordinator at your governmental agency, such as the Department of Developmental Services.

3.       Lay the groundwork to implement your person-centered plan

The processes of person-centered planning, determining the ideal structure for a home, seeking funding sources and finding compatible roommates and support providers involve considerable time and research.

There are many decisions to make: What are the alternative housing options? Single family home or shared living arrangement? What about transportation? Support provider? Special needs trust or ABLE account? Who will take over after parents’ lifetimes? 

In all instances of person-centered living arrangements, large or small scale, the reality is that it requires substantial forethought and commitment from parents or caregivers. The person-centered plan, including vision, can evolve over time, just as people and resources change over time. Yet, for families who have accomplished this, it is well worth the effort, as the plans put their children first, empower them to live independently and promote integration with the community. 

Practical tip: Resources for alternative models of living arrangements for people with disabilities include our webinars on family-governed housing cooperatives, intentional communities and mini boards. “Cents and Sensibility: A Guide to Money Management,” a book created to improve financial literacy for families and people with disabilities, is a helpful resource, available for download and includes a section on developing a housing plan. 

How are you Imagining Better? Do you have examples of person-centered planning or inclusive living arrangements you’d like to share with us? Send an email to hello@massfamilies.org.