ORONO — When one of my daughters was a 3-year-old preschooler, her special education teacher paraphrased psychologist Erik Erikson: “The child’s job is to develop independence. The parent’s job is to let go and support that independence.” Thirty-four years later, my challenge as mother of a woman with disabilities remains: Support her drive toward independence, and let go of my fear about her vulnerability in the world.
Parents of children with disabilities can’t provide the lifetime of assistance our family members need. We need your help. Our adult children need support services.
What do “needs help” and “support services” mean for my daughter? She needs help solving everyday problems – lost key, plugged toilet. Kitchen hazards are plentiful, yet she wants to cook. Learning basic life skills? An ongoing process. At work she needs help learning and organizing tasks. She needs help building friendships. She can learn, with help, and she is determined to do things herself. With assistance from trained support staff, her independence grows, and she thrives.
Mainers with disabilities who complete high school don’t automatically receive adult support services. If eligible, they go on a waiting list. While waiting, they may go into crisis from losing their school supports and social connections. Skills they worked hard to learn in school often disappear. In some families, a parent quits work to care for their child, but many cannot. A waiting list leaves the whole family isolated and struggling.
Some adults with disabilities are ready to leave their family homes. They may receive some funded assistance, but not enough to live away from home. Yet parents age, become ill or infirm, and eventually die. These adults with disabilities – eligible for comprehensive funding – wait on a list for enough funding to live away from home. Some wait years. Sometimes it takes a death or other crisis before someone receives sufficient funding for a different residential situation. Having to move during a crisis creates additional trauma for vulnerable individuals.
Each person on these waiting lists has unique strengths and challenges. The common denominator? Everyone is awaiting the help they need to live safely, develop independence and participate in their community. Instead of continuing to learn and grow, their lives are on hold.
To address this situation, parents whose adult children waited for service funding – or are still waiting – worked with state Sen. Rebecca Millett to develop “An Act to Eliminate the Waiting Lists for Home-based and Community-based Services for Adults with Intellectual Disabilities, Autism, Other Related Conditions and Brain Injury.” The bill was approved unanimously by the Legislative Council’s Democratic and Republican leaders for consideration in the Legislature’s 2020 session.
As of Oct. 1, the Maine Department of Health and Human Services reported that 1,918 adults with disabilities are on waiting lists. Of those waiting, 699 don’t receive any support services.
My daughter is among the 699 who receive no funded support. When she finished high school in Maine in 2003, there were no waiting lists. Over the next 12½ years, she lived in her own apartment, benefiting from funded part-time assistance. Even with funding, there are challenges to living, working and developing friendships when one has disabilities. For three years, she lived in a farming community in New York, the state where her only sister lives. Last December she returned to Maine. Since January, she has been on two waiting lists. She’s living at home now after 15 years living elsewhere with support. Asked how it felt, she replied, “I happy with you guys, but it (living at home) backwards.”
Parents of adults with disabilities agonize about our children’s futures after we are gone. Waiting list parents share an additional, immediate concern: When can our children build their adult lives separate from the family, with the assistance they need to succeed?
Enabling Mainers with disabilities to thrive in their communities is not a partisan issue – it is an issue of heart. The Dalai Lama notes, “It is not enough to be compassionate. You must act.”
She and I count on the Legislature and the governor to act. Through no fault of their own, these Mainers need help to live their adult lives. Please eliminate the waiting lists for adults with disabilities. That’s the way life should be.
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