Penny Foolish and Pound Cruel

Susan Senator

A new era has begun for me. All the past years I’ve been going to these state hearings on proposed cuts to special education in Massachusetts. I’ve been one parent out of many parents, professionals, and students protesting cuts to programs that have never been fully funded to begin with. But today I testified at a state hearing on Massachusetts’ proposed cuts to the Adult Foster Care program (AFC), the first time I’ve spoken as a parent on Nat’s behalf — for his adulthood.

I’ve written recently about the AFC program, which is funded through MassHealth and Medicaid, about how this program is part of the new movement to keep those with disabilities in their communities and homes, rather than sending them to nursing homes and institutions; The part AFC plays is that it provides a small stipend to a caregiver (usually a parent, a foster parent, or a hired caregiver) to live in the home of the disabled person 24 hours, 7 days a week. For a Level I case, someone who needs prompts to do almost anything and who needs supervision at all times (Nat is a Level I), the stipend is about $9,000 a year, which when broken down comes to $2.07 an hour. This is the program that Massachusetts feels it must cut by 6.2%.

Have you ever tried to hire someone for $2.07 an hour? I couldn’t even get my neighbor’s fifth grader to water my plants for that. Imagine trying to hire someone professional enough to care for Nat in all his glory for that pittance. Or, consider that this money would be to substitute for my salary as an adjunct professor. Or, if I could not care for Nat, then this stipend would be for Ned, currently a software engineer supporting a family of five, who would have to leave his job or reduce his hours. And we are people who are doing well enough, with savings, etc. What are the people who work two jobs to survive supposed to do to support their disabled loved ones?

Institutions, you may say. Well, you would be totally wrong. Speaker after speaker from different agencies that administer AFC programs — about 120 people filled that room — reported the comparative figures, of nursing home care vs. AFC. Basically, nursing home and institutional care cost twice as much per person as the AFC program. Institutions are becoming a thing of the past, a former era of relegating of individuals with disabilities to the margins, the dingy basement rooms, the closets, the attics of the world.

Damnit, I am not going to let that happen to Nat and his friends; 22 years of hard work in school, all those resources and teachers’ energy going into helping him become a person in the world, an individual in his own right, someone who works, who is a team player, and who brightens people’s days with his sunny face. Someone who, prior to his intensive residential education, was at times so destabilized by his environment that he became violent. This created an unhealthy home for my family, including Nat, and especially Ben, my youngest. Imagine growing up, tiny toddler with an out-of-control brother that even your all-powerful parents could do nothing about. What does that do to a person’s view of the world, ability to trust, to manage fear?

What does it do for Nat, who is also a person who deserves to survive in this world when I am gone. Families with disabled loved ones need support, or they stand to fall apart. And then who cares for them, who picks up the pieces? Get a good look at some of the street people you see, wandering around dirty and uncared for, talking to themselves … what is their story? What is their diagnosis, do you think?

I told these state officials that parents of 21 year olds, like me, are terrified of what comes next. They had a support system in public education, professionals to help and educate, however imperfect it was. Adult services should not feel like you are on the edge of a terrible precipice. A program like AFC — as little money as it is — still allows people to continue making progress in their homes or in Nat’s case, with other roommates sharing the one caregiver in an apartment of their own. I told these folks:; “Don’t do this. It is penny foolish and pound cruel.”