Two Housing Options for Adults with Developmental Disabilities

Staff Writer
Baystateparent Magazine
By Marshal D. Haneisen

Carl Baker of Leominster has worked in human services for the past 15 years. When he and his husband bought their first home, they had extra room — so much so, they enrolled in the Seven Hills Shared Living program, in which they provide independent living space for a woman with developmental disabilities.

A common concern amongst parents of children with developmental disabilities is the worry of where their child will live in adulthood. One means of addressing that anxiety is to research and learn about the options — and there are many. Two housing options to consider are Shared Living and Adult Family (Foster) Care.

“Shared Living and Adult Family (Foster) Care, or AFC, are both individualized approaches to housing and long-term care,” said Amanda Maron, area director for Seven Hills. Maron is based out of the Fitchburg Family Support Center for Seven Hills; Seven Hills manages approximately 500 Shared Living and AFC arrangements in Massachusetts.

Shared Living and Adult Family Care have many similarities, Maron said. One primary difference is the funding source. Shared Living is financially supported through the Massachusetts Department of Developmental Services (DDS), and any individuals seeking a Shared Living placement must be registered with that office. AFC is funded through Medicaid, and anyone approved for MassHealth Standard can apply. Both programs are person-centered, which means the goal is to meet the needs and wishes of the individual, allowing him or her to live in a home environment providing opportunities for independence, as well as community inclusion.

Inside Shared Living

In a Shared Living arrangement, the individual lives in the home of a trained provider. Providers, and sometimes members of the provider’s family, participate in extensive training in preparation for this important role. Trainings include, but are not limited to, human rights, first aid and CPR, and de-escalation and positive behavior supports, as well as administering medication, if applicable. In addition to the basic training program, Seven Hills provides more personalized training and guidance based upon the needs of the individual, Maron said.

Sometimes, Shared Living providers are inspired to the role from their prior experience in the care field, like Baker. He started working in group homes in college and eventually ran them. He has an undergraduate degree in psychology and sociology, and a graduate degree in public administration.

“I love the idea of mission-driven work to help change someone’s life,” he said.

When Baker and his husband bought their house it was the first time in their lives together that they had extra room. After learning about Shared Living, Baker mentioned it to his husband one day, almost as a joke. That joking suggestion planted a seed that grew.

“The more we thought about it, the more I thought this could be something to look into further. I reached out to co-workers who had done it to ask what was good and what challenges they faced,” he said.

Seven Hills worked with the couple to find a great match. The organization coordinated meetings, dinners, and overnight visits to ensure the dynamics were compatible.

“We really got lucky, our match was unbelievably great from Day One,” he said.

Shared Living providers typically serve as occasional overnight respite providers for a period of time before transitioning to a full-time placement. The Bakers provided overnight respite for the young woman, who was in the process of selecting a permanent placement. Seven Hills is committed to the person-centered nature of the program, so individuals meet with multiple potential provider families. The individuals decide which provider family they would like as a permanent home. In January, she picked Baker and his husband to be her permanent providers, he said.

“In the seven months we have been doing Shared Living, she has really grown — flourished. She has matured a lot,” Baker said. The couple even renovated their basement to provide the woman with a bigger, almost apartment-like space, affording her more independence.

According to Baker, she inspires them to get out more and do fun activities with her, like going to the beach and Skyzone. They even started attending her church and see her mom there every week.

“We have gotten as much out of this as she has. There is a real excitement that comes along with expanding your family,” he said.

Seven Hills builds in overnight and day respite hours for an individual, as well as vacation time for the providers. The Seven Hills Family Support centers have a pool of trained respite providers available to help back up Shared Living and AFC providers.

“We also encourage providers to connect with each other and organize events to bring providers together,” Maron said. Seven Hills Family Support Centers host activities allowing providers to build a social and support network.

Maron sees many families seeking out Shared Living or other semi-independent housing options when an individual is between 22 and 28 years old. Shared Living can be discussed during the transition to adulthood planning with the DDS transition coordinator, who will then make the referral to a provider agency, such as Seven Hills.

Adult Family Care

In the AFC program, an individual often lives in their home with their parents, however the family can obtain financial assistance for providing housing and living supports. According to Jared Moore, Seven Hills assistant vice president, the AFC program was initially created to meet the needs of the elderly. Now, it also provides a housing model for adults with developmental disabilities. AFC is available from the time an individual is 16, however, the AFC provider cannot be the individual’s legal guardian.

“Sometimes we see situations where an adult sibling is made guardian so mom and dad can be the AFC providers,” Maron said.

Each agency has slight variations to their Shared Living and AFC programs, so parents should research options.

Baker’s advice to parents is to reach out to other parents and families who have experienced the program. The anxiety around not knowing can be worse than finding out what is available, he said. He also emphasized the importance of allowing an individual to be as independent as possible.

“I know from my past work experience, that it is really difficult for parents,” he noted, recognizing that parents spend their lives advocating for their children. But sometimes that advocacy might include letting people fail and learn through mistakes, because that is part of maturing and growing, he said.

Moore and Maron have seen amazing success stories in both models. In some situations, the Shared Living relationship is more like peers or roommates. In other scenarios, the dynamic is similar to an individual becoming part of the provider’s family, they said.

For more information on Shared Living and AFC program through Seven Hills, visit the Residential Options section of its website. The website provides contact information for the Seven Hills Family Support Centers located throughout the state. Another important resource when researching options around transitioning to adulthood is your child’s DDS Family Support Service Coordinator.