End HCBS Waitlists: Pass the Better Care Better Jobs Act Now! (by Lisa Wesel)
Lisa Wesel at a Maine State House rally for I/DD services. [image description: A woman with light skin and curly grey hair holds a hand painted sign (white letters on black background) that reads “You Promised! LD967 To Support IDD Services.” The woman is also wearing black clothes and eyeglasses.]
I’m tired of begging for crumbs.
That’s what people with disabilities and their families do – we beg for scraps of funding from our state and federal governments.
We shouldn’t have to. The Biden Administration is committed to increasing funding for Home and Community-Based Services (HCBS), crucial funding to eliminate state waiting lists, such as the one that my daughter Lidia is on in Maine. Congress is considering the Better Care Better Jobs Act (BCBJA) now, which would expand access to HCBS, enhance quality of life for disabled people and their families, and help create better home care jobs.
Lidia, who is just shy of 26 years old, has been baffling the “experts” for most of her life. “Don’t expect her to read,” they said, but she devours chapter books, especially Sherlock Holmes. She took a while to learn to walk, but today enjoys riding a bike. She loves jokes and wordplay and making art.
Lidia has Dup15q, a rare genetic disorder that causes developmental disabilities and seizures. Like many diagnoses, it presents on a broad spectrum. While Lidia can do math in her head, she needs support to understand the value of money. She cannot safely cross a street by herself. She can accomplish many activities of daily living – showering, toothbrushing, cooking a simple meal – but she needs reminders to do them. . Lidia also needs someone to manage her life-saving seizure medications. All of which is to say that Lidia could live in her own apartment with support from home care workers.
In Maine alone, there are nearly 2,000 people on the waitlist for the HCBS Medicaid waiver that serves adults with intellectual and developmental disabilities and autism. That’s the waiver that would support my daughter and her peers in a home of their own, in a job, and in the community. The BCBJA would provide enough funding to eliminate waiting lists for those with disabilities.
Maine’s waiting list, however long, doesn’t give a complete picture of critical needs – countless souls have come off the waitlist in name only, because there aren’t enough direct support professionals (DSPs) to assist them. Too many DSPs have been forced to leave the profession because their work has been underpaid and undervalued for so long. In Maine, wages are still low. Passing the BCBJA would allow states to raise wages.
A coalition of self-advocates, parents, and providers just went through a grueling state budget process, during which we tried to convince our governor, Janet Mills, that our children have value, and that they deserve to live full, safe, dignified lives. We made some headway – Governor Mills threw some money our way, and patted herself on the back for providing enough funding to support people who are deemed “Priority 1” on the waitlist – defined as people whose circumstances are so dire that they qualify for adult protective services. It is shameful that there even is a waitlist for people whose lives are at risk.
Lisa with her daughter Anita. Lidia agreed to have her story told, but did not wish to have a photo posted of her. [A woman with light skin and curly grey hair, wearing eyeglasses and a vivid red wind jacket has her arm around a younger woman with light skin and brown hair drawn back into a ponytail. She wears a white jacket. The older woman holds a red t-shirt that says “Don’t lose the Right to Choose!” A note is pinned to it on which is handwritten, “This shirt is from my very first march on Washington 30 years ago. WHY ARE WE STILL HAVING THIS CONVERSATION?!?!?!?]
Governor Mills doesn’t like to talk about the people who are Priority 2 on the waitlist, a group the state seems to have forgotten. The Priority 2 waitlist, which will just keep growing as a result of this year’s budget, is for people “determined to be at risk for abuse” in the absence of HCBS services. Maine lawmakers have decided that it’s okay for people with disabilities to live at risk of abuse.
My daughter is “lucky.” She is deemed Priority 3, because her father and I are still able to care for her in the home where she grew up. It’s not the life that Lidia, as an adult, wants or deserves. But Maine has decided that providing her with a life of dignity is its very lowest priority, and Congress has yet to pass the HCBS funding increase the Biden Administration has requested.
After five years on the waitlist, Lidia continues to live in her childhood bedroom, while her father and I live in fear. We are one car accident, one serious illness, away from no longer being able to care for her. Then what would happen to her?
Increased federal funding for Home and Community Based-Services would go a long way toward solving that problem. But crumbs and table scraps won’t be enough. Congress: Please pass the Better Care Better Jobs Act now! Lidia’s future is at stake.
Lisa Wesel of Bowdoinham, Maine, is the mother of two adult daughters. Her older daughter, Lidia, was born with a rare genetic condition called Dup15q, which causes intellectual disabilities and seizures. Lisa has been advocating for the rights of people with disabilities for more than 20 years. She serves on the board of directors of Community Connect Maine, a non-profit organization dedicated to connecting individuals, families, caregivers, and communities to improve the system of care for people with developmental disabilities and related conditions.