The current health care debate is not about health care policy or even money. It is about human lives. The lives least often discussed belong to our children, all living with disabilities, all working to navigate the world as we, their mothers, wonder how they will survive.
“Are you ready to wash clothes?” asks a direct support professional. Dan, my adult son with autism, living in a group home, nods. He communicates minimally, responding to yes-or-no questions, using a few signs or pointing to pictures on a communication device.
Throughout his life, skills that we learned effortlessly, something as simple as waving, took years of training. Yet he carts clothes to the basement, puts them into the machine, and presses the “on” button. He can also do other daily routines with prompting.
And he volunteers, delivering Meals on Wheels and taking excess food from Bates College to a local food pantry that welcomes his arrival. For fun, he jumps on a trampoline, and his neighbors tell me it is a pleasure to watch him.
History demonstrates that when Dan is denied appropriate resources, he suffers a rapid and frightening loss of skills and a change in behavior: He does not dress himself or eat with utensils; he becomes aggressive, biting to communicate his frustration.
But adequately reimbursed DSPs, access to health care, support for community living — all funded under Medicaid — as well as special education mandates, have allowed him to have what we all deserve — a life of civility. My heart breaks to know that funding for commonsense, humane safety-nets and policies are being jeopardized by state and federal actions, threatening all people living with disabilities, like Dan. I’m terrified.
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On June 11, I watched both my daughters graduate from Mt. Ararat High School. I was joyous as my 18-year-old received her diploma and walked off the stage toward college and limitless possibilities. Her 20-year-old sister, Lidia — who has intellectual disabilities and epilepsy — beamed with pride when her turn came, while I was overcome with terror.
Lidia has no idea that the state and federal governments are trying to kill Medicaid, which pays for the programs that fill her young adult life with purpose. There’s the job coaching that allows her to have paid employment at a nursing home, where she has volunteered for years and knows all the residents’ names and room numbers by heart; and the day program where she’s making new friends, learning to produce artwork to sell, and becoming part of the only other community she has ever known after a lifetime in public schools.
I haven’t told her that there are 1,550 people on a wait list for the waiver that will provide her with the only chance to move out of our house and into a group home, where I had always believed she would be safe and taken care of for the rest of her life. I certainly can’t tell her that recently, because the state underfunds those programs and so poorly pays the DSPs, those homes have started closing, and some of the residents are now homeless, hospitalized, or incarcerated.
How should I tell my child that society doesn’t value her; that there could be no place for her to go after her father and I die?
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My daughter, Carrigain, wanted to read about her favorite activist, Malala Yousafzai. We’ve read it so often, I think she has most of it memorized, but last night, for the first time, Carrigain interrupted me. “I’m an activist too,” she said, referring to the time she accompanied me to Sen. Angus King’s office to talk about health care.
I was at once proud and heartbroken. Proud because her father and I have raised her to be a strong self-advocate, and heartbroken because I know just how desperately her life will depend on those skills.
Any bill that fundamentally changes Medicaid is dangerous for people with disabilities, but both the House and Senate proposals get increasingly more dangerous over time. Carrigain will turn 18 in 2025, when Medicaid funding is scheduled to drop precipitously. By that time, Maine will have likely cut all home and community-based service waivers, the alternative to institutionalization. This will seriously limit her options for living a meaningful life on her own, as the necessary supports will be gone.
Her father and I are happy to have her live with us forever, but that is not what Carrigain wants and not what she deserves.
Institutions like Pineland may be closed, but the disability rights movement never ended. Now it looks like my daughter, instead of standing on the shoulders of the giants who fought before her, will face the monumental task of re-building rights that at one time were almost taken for granted. Good thing I am raising an activist.
Kim Humphrey, of Auburn, is the founder of Community Connect Maine and the mother of Dan, a 28-year-old man with severe autism. Lisa Wesel, of Bowdoinham, is a co-director of Disability Activists and Allies of Maine, a member of Midcoast Community Connect and the mother of 20-year-old Lidia, who has Dup15q (isodicentric chromosome 15), a rare genetic disorder. Erin Rowan, of Scarborough, the mother of Carrigain — an almost 10-year-old girl with Down syndrome — is a longtime advocate for inclusive education, and a co-founder of DAAM.