Why I’m Fighting for Home and Community-Based Services: An Interview with Jen Reese

Cailyn out in her community, assisted by a direct support aide. [image description: A young disabled teen wearing pink sunglasses and a bright pink outfit sits on an adapted red bike. An aide assists her moving through a sensory “tunnel” (an open pipework on which various objects are suspended).]

The Better Jobs Better Care Act would provide desperately needed funding for Home and Community-Based Services (HCBS) for thousands of disabled children and adults nationwide. Through Medicaid waivers, HCBS provides skilled nursing services, direct support professionals, and equipment and supplies not covered by private insurers to people with disabilities so that they might live where they choose and remain in their homes and communities, rather than be sent to institutions. 

HCBS is an essential part of disability rights. However, some in Congress don’t understand these rights. Uninformed decisions by lawmakers threaten the lives of disabled people and those who care for them. Jen Reese, mom to Little Lobbyists Cailyn, shares her story. 

Tell us about your family.

My husband and I have two daughters, ages 9 and 13, and we live in Virginia. My husband is a software developer, and I work in a role supporting families like mine--with kids with disabilities. 

Explain your daughter Cailyn’s complex medical needs and disabilities.

My daughter Cailyn is 13 and a happy, smiley girl. At five days old we noticed her having seizures, and at a week old she spent her first week in the hospital. She was diagnosed at 4 years old with a rare genetic anomaly that affects proteins in her brain. Years of uncontrollable seizures have left her with intellectual and developmental disabilities. Due to these, she needs total care, including her liquids and medication via feeding tube. Cailyn does not communicate verbally and uses a wheelchair for mobility.  

When did Cailyn first get access to HCBS? How many years did you wait?

When Cailyn was about 16 months old, an early intervention therapist convinced us to apply for a Medicaid Waiver. She qualifies due to her disabilities and need for nursing home level of care. There was no waitlist for the entry-level Medicaid Waiver in Virginia, and it was life changing. We were able to have caregivers come into the house because a regular daycare could never take care of her. Plus she’d be super-susceptible to any germs from the other kids. We have good private health insurance that covers a lot, but sometimes medical equipment or services aren’t fully covered. Our out-of-pocket costs were tremendous before the waiver. Medicaid is Cailyn’s secondary health insurance and helps her stay in our home instead of an institution. 

If we didn’t have Medicaid, I would not have been able to keep working, we would not still own our home, and having another child would not have been possible, given the financial limitations. Cailyn waited almost 10 years for Virginia’s Developmental Disability Medicaid Waiver, a second Medicaid Waiver in Virginia that includes supports for employment and group homes. There are still approximately 12,000 people on that waitlist in Virginia, and they are given the waiver based on priority. Sadly, some adults have to be facing homelessness before they are awarded a Medicaid waiver. 

How do HCBS help your child and your family survive and thrive?

Without Home and Community-Based Services, our daughter would not be home with us. She would live in an institution. 

Our extended family has a history with institutions, and I saw it break my Grandmother’s heart. Her youngest son, my uncle John-John, had cerebral palsy and severe seizures. I remember him and have pictures of me as a little kid on the day we had to take him to an institution.

I can’t imagine my Grandmother’s guilt and fear. Guilt that she couldn’t care for her son anymore and fear of what would happen when strangers were responsible for his well being. Over the years, I remember stories of him getting severe burns because no one checked the temperature of the bath water before putting him in, and of someone dropping him and breaking his arm. But at that point, my Grandfather had passed away and my Grandmother had a bad back injury from having taken care of my uncle for as long as she could at home. 

The system has changed, and Home and Community Based Services will help my husband and I keep Cailyn home. We’re able to have nurses come into the house and help care for her, and we’re able to focus on activities with her little sister, keep up with household chores, or just take a break. 

Some members of Congress don’t think HCBS are real infrastructure. How do you respond to that? 

Infrastructure is defined as the basic physical and organizational structures and facilities needed for the operation of a society or enterprise. 

Seriously, you’re living in a bubble if you think Home and Community-Based Services aren’t infrastructure. Societies are required to take care of their disabled people, and we haven’t been doing a good enough job. If I didn’t have help for my child, I’d be out of the workforce. Caring for Cailyn also provides jobs for others. Infrastructure is not just bridges and roads. 

There are HUGE waitlists for HCBS, there aren’t enough providers for services, and the reimbursement rates are so low it’s despicable. A babysitter in my area for a child without disabilities costs about $20 an hour. Medicaid pay rates for caregivers for people with disabilities in my area has just hit $13.60 an hour--even Target starts its workers at a higher rate of pay than that. 

What would happen to your child and to your family if the HCBS you receive were reduced or even taken away?

Threats to Medicaid under the Trump Administration pushed my anxiety levels through the roof. If HCBS were taken away, my family would be broken. How would we come up with $6,000 extra dollars a month to pay for the feeding tube supplies and special formula Cailyn needs, plus diapers, plus medications, plus wheelchairs, plus a hospital-style bed, plus a modified van for transportation etc., plus, plus, plus …

How would we be able to keep her home? We’d be financially devastated. Bankruptcy would have to be a consideration, including selling our house, cars, and raiding our retirement fund--it’s a nightmare I’ve had many times. It is all overwhelming and makes me want to vomit at the thought of it. 

Do you know of families in Virginia who are still waiting for HCBS? What would you urge them to do?

I know many families who are still waiting--12,000 in Virginia alone. Waiting for our government to do the right thing and provide funds for disabled people to have a life like everyone else. Everyone should be able to live where and with whom they want. If they need supports, we have to make sure they are in place--healthcare, transportation, housing, and job supports. Please do the right thing. President Biden’s funding recommendations are a wonderful start and it’s really just the right thing to do!

Describe the power of HCBS in a single sentence. 

HCBS help keep my daughter happy, healthy, and safe. 

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Jen Reese is a member of Little Lobbyists from Virginia.