The majority of adult children with significant intellectual disabilities live with their parents or other family members through the child’s 40s, and often 50s. (For purposes of this article, we will refer to the provider as the parent, and the adult with special needs as the child, although this article applies to siblings and other relations as well.) Only about a third of all intellectually disabled citizens in Massachusetts are served by the Department of Developmental Services (DDS) receive housing provided by the state. These people -- tending to be the older or more serious cases -- are considered Priority One for housing by DDS. All other DDS clients are either Priority Two on No Priority. Click here for a description of state-supported housing.
Adult children served by DDS who cannot live independently without support, but who are not categorized as Priority One, may still have options. Depending upon eligibility, financial assistance to help the child live on his or her own may be provided through a combination of MassHealth’s Adult Foster Care or Personal Care Assistants programs, SSI, SSDI, Section 8, and/or food stamps.
The biggest variable is in the caregiving. If the child can live somewhat independently, work at least part-time for money, and qualify for one or more of the government assistance programs mentioned above, he or she may be able to live successfully outside the family home without financial help from the parents. If the child needs a lot of assistance and is unable to work for money, then the parents probably will have to help pay for the child to live outside the family home, even with government assistance. The “private-pay” amount that parents have to pay can vary from a few thousand dollars a year to $75,000 a year or more, depending primarily on staffing needs.
When getting started down this road, parents should first consider what housing and staffing model would work best for their child. The basic models for housing outside the family home can be divided into four categories: (i) group homes; (ii) shared living; (iii) supervised independent living; and (iv) community living. Note that DDS will not pay for any of these models if the child is not considered Priority One for housing, in which case the parents will have to work out the finances themselves.
In a group home, several disabled people live together and share staffing, activities, and routines. If parents are organizing the home themselves, without DDS support and funding, they may want to consider live-in staff, because it is significantly cheaper – in most cases the live-in person is not paid for the overnight hours, assuming no work is required during that time. This means the home would have to be big enough to accommodate a live-in caregiver.
The advantage of a group home is that the residents can share expenses, including caregiving expenses, and also share experiences. They can cook and eat dinner together, and go together on outings as a group. This is particularly appealing option to those in their 20s and 30s.
Group homes that are operated by nonprofit organizations are considered to be single family residences according to state building codes, so the homes are allowed by law and cannot be banned by the neighbors, no matter how hard they try. In Massachusetts, zoning ordinances restrict the number of unrelated people who can live together to no more than five unrelated people.
“Shared Living” is a term of art that refers to a DDS-funded model in which the child lives with an existing family other than one’s own family. We include a discussion of it here because the model can also work in situations in which the housing and caregiving are funded privately or in combination with a MassHealth program. A family is trained to care for the person with a disability in the family’s home, and incorporates that person into their regular routine. The family can be a traditional nuclear family (often seen in western Massachusetts), or a single-person family. The primary caregiver is paid a stipend to feed, house, and take care of the disabled person.
Success with this model is completely dependent upon the family selected, but we have many satisfied clients using the shared living model. It can even work for medically fragile individuals who need round-the-clock care, if the primary caregiver is supplemented with extra staff. Advantages are that there tend to be fewer problems with fellow residents and staff, as compared to a group home, while still providing an active family life.
Supervised Independent Living
Supervised independent living is for someone who can live independently with support from an outside staff person who comes in once or a few times a week to check on things. Specialized Housing, Inc., in Brookline (http://specializedhousing.org/) offers a good example of this. With Specialized Housing, the resident or his family must purchase the condominium in a Specialized Housing building, and Specialized Housing provides the support as part of the regular condo maintenance fee. Of course someone could live in a rental unit (or accessory apartment – see http://www.margolis.com/our-blog/accessory-apartments-keeping-our-special-needs-children-and-elderly-close) and receive the same type of support, by contracting with a community support agency such as Jewish Family and Children’s Service: www.Jfcsboston.org.
Special communities for people with disabilities are no longer favored. Although some communities for people with special needs still exist because they are grandfathered in, such as Camphill Village in New York and Bittersweet Farm in Ohio, the federal government is discouraging this type of living, which it considers quasi -“institutional.” Although theoretically parents who are paying privately can do what they want, in practice we have found that there are too many roadblocks to make the creation of a new community setting feasible.
For legal assistance in connection with housing for your adult loved one with special needs, contact Karen Mariscal.