Our 
30-year-old autistic son Billy, who is intellectually disabled and needs help with every aspect of life, does not qualify for state-funded housing, because he is not needy enough. This blog post is my attempt to explain the system and why that is the case. (I note that housing for the intellectually disabled is currently in crisis, primarily due to the lack of caregivers. This article explains how it is supposed to work, not how it is actually working now.)
There is no waiting list for housing in Massachusetts. Our state considers state-funded housing to be for people who need it urgently – everyone else doesn’t need it at all. As a result, only about 15% of the people who are intellectually disabled (and none with ASD who are not intellectually disabled) are placed in group homes or other state-funded housing, where everything is paid for. The rest are usually home with their parents, where very little is paid for.
State-funded housing is enormously expensive, averaging the state about $120,000 per year per person, mainly because staffing a house 24/7 is so costly – it requires various caregivers to take 8 hour shifts, plus back-ups for when the caregivers don’t show up, plus a house manager. Not to mention food and transportation, etc. So housing is offered only to those who truly can’t reasonably live at home with their families.
Those who qualify for housing are considered “Priority One,” and everyone else stays home. (There is a much smaller Priority Two category, and those people also have to stay home until the right place for them opens up, which could be years.) Most people – including my son Billy, who is non-verbal and can’t really dress himself, but is fairly well behaved – are listed as “No Priority.”
There is some subjectivity to the determination of who needs housing, but let’s start with the basics. When your child is approaching 22, which is the age in which the educational entitlement ends and the Department of Developmental Services (DDS) takes over, DDS does an assessment of your child, using the MASSCAP (Massachusetts Comprehensive Assessment Profile) test to determine your child’s needs, both for housing and for day/employment supports. This test will determine whether your child will be prioritized.
The housing assessment has two parts: (i) you; and (ii) your child. It is not just a matter of whether your child needs significant support in her daily life – dressing, eating, toileting, etc. It is a matter of whether you are equipped to provide it. If you are managing to take care of your child and live a reasonable life at the same time, regardless of the child’s functioning level, the child will not receive housing. If, on the other hand, the child is somewhat independent but needs help, and has no parents to provide it, the child might receive housing. Or if your child needs a staff of people to take care of her, even if you and your spouse are around and functioning, she will probably receive housing.
This leads to some interesting results. A child who has very high needs does not get housing, and a child who is quite independent does – because in the first case, the parents are able to take care of the child, and in the second, they are not, due to the constraints of the particular family (death, divorce, etc.).
Another factor that skews the results is whether the child was already in a residential placement before he or she turned 22. Even if the child could theoretically live comfortably at home after they graduate, the state often gives those people a Priority One designation, because it would be difficult for the parents to reintegrate their child back into their lives. This is annoying to the rest of us who have kept our child home the whole time, but true.
Age 22 is an important year, with respect to housing. A special number in the state budget pays for those young adults who will need housing when they turn 22 and leave the educational system – known as the “Turning 22 line item.” Because this item is only budgeted for once, when the person is 22, it is harder to obtain state-funded housing after age 22. (The person who received funding at age 22 continues to receive funding throughout their lifetime, via a different line item, but a person who wasn’t funded at age 22 does not.) In other words, parents who think their child needs housing at age 22 but are not quite ready to let them go should not decide to wait a year and apply at age 23. Once a person is designated “no priority,” that designation continues until there is a significant change in the family circumstances, such as a death in the family, or a parent going to a nursing home.
When the DDS staff member does the MASSCAP test, she will ask you whether you want to apply for housing. Many people do not, and often that is commendable – they want to keep their child home for the foreseeable future, believing that their child and their family will be better off that way. But for those who think their child needs a group home, the correct answer is yes. If the child qualifies for Priority One housing, the family would then work with DDS to find the appropriate placement, whether it be a group home or Shared Living, discussed in a separate blog post to come.
When our kids were young, my husband and I were able to save money for our typical children by contributing to a college savings plan, where the money could grow tax free, but we weren’t able to do that for Billy, who really needed it the most.