MORGANTOWN – Among the items Congress is debating for its $3.5 trillion social infrastructure package is a proposal for $400 of additional funding for Home and Community Based Services (HCBS), designed to help seniors and people with disabilities to receive care at home instead of in institutional settings.
The Dominion Post spoke with two West Virginia moms who have children on the state’s Intellectual and Developmental Disabilities Waiver (IDDW) program funded through HCBS who explained why the program is invaluable to them and their families. We also contacted three members of the state’s Congressional delegation to get their views on the negotiations.
The $3.5 trillion package is known as the budget reconciliation bill – because whatever its final form it will pass without GOP support through the process called reconciliation, which bypasses the filibuster – and is titled the Build Back Better Plan.
Late last week, the House Energy and Commerce Committee recommended trimming the HCBS amount to $190 billion in the Better Care Jobs Act, which would be incorporated into Build Back Better.
Tina Holcomb lives with her husband, Eric, and their three sons in Pratt, situated along the Kanawha River in eastern Kanawha County.
Shortly after their third son, Aidan, was born, she said, they saw he had some developmental issues: delayed speech and fine motor skills and hearing problems. He learned to walk and got into things just like his older brothers, but after age 3 started regressing.
In March 2017, he was diagnosed with Sanfilippo Syndrome, which affects the brain and spinal cord and is characterized by deterioration of neurological functions. Aidan was diagnosed with Type 3A, the most severe.
He was never never been potty trained or able to say his own name. Now 9, he’s steadily losing mobility, speech, sign language. “It’s hard to go from the wild, fun-loving little boy who’s climbing the shelf to get into the refrigerator to get what he wants to him barely being able to function and walk,” she said.
His expected lifespan, she said, is about 12 to 17 years, so his life is already half over. He requires 24-hour care and tube feedings. With physical therapy, doctor appointments and all the rest, “it’s a non-stop revolving door for us.”
And they have to give attention to their other sons – Christian, 15, and Ethan, 13 – who are both busy and acitve and love and help care for their “little hot mess express.”
“It’s been life altering, It’s been life shattering,” Holcomb said.
Through IDDW, the Holcombs are able to pay 2.5 hours of respite care per day. “It has been such an absolute blessing for our family.”
Daycare would be $400 a week, she said, but IDDW allows Eric a more flexible schedule to stay home with Aidan more during the summer, and provides for the respite care. Without the program Eric would have to quit his job.
Asked what message she would want to pass to the state’s Congressional delegation, she said, “Live an hour in my shoes, it’s clearly that simple. You’ve got a baby at home that’s dying and there’s nothing you can do. … I don’t want them to know the heartache, but for them to just experience a minute part … it’s quite stressful sometimes.”
Ashley Orndorff and her husband, Chris, of Charleston, have two children – a son and a daughter, Hannah, 7, who has Down Syndrome and ADHD.
Ashley Orndorff has served on the board of the Down Syndrome Network of West Virginia since Hannah was 1, she said, and last year was hired as executive director – a part time job of about 20 hours per week.
Ashley and Chris have had to juggle their jobs over the years to care for Hannah, she said. Chris now works nights. Ashley recently left her full-time job – she’s an occupational therapist who provided home health care – to care for her grandmother, who had dementia but passed away from COVID.
Like other students, Hannah was able to return to in-person schooling this year. “It’s easier now that’s she’s in school. but it was definitely difficult this summer, and last year when she was doing e-learning it was super difficult.”
In summer 2020, Hannah got off the IDDW wait list. Ashley is her full-time caregiver, compensated through the program for just over 40 hours a week.
This year, they put respite care in their budget, but there’s no on willing and qualified to provide, she said. Statewide, there’s a shortage of respite workers (a look at the IDDW community Facebook page bears that out).
So more money for HCBS would open the door for more, better paid respite workers, she said. “Everybody is having trouble holding onto respite worker or caregivers because they usually come along and find a position that pays more.” Also, some families have respite budgets, but not enough to cover the full hours they need.
Some families draw on extended family for respite care, she said, but that’s not an option for them.
Biden’s $400 billion proposal would enhance the federal Medicaid match for HCBS, and expand and strengthen care giving jobs, says KFF (also known as the Kaiser Family Foundation.
“Like people who rely on HCBS, direct care workers who provide these services have been disproportionately affected by the pandemic,” KFF says, The workforce is predominantly female, low-wage, and people of color. Home care workers earned on average $11.52 per hour, or $16,200 per year, in 2018. “Despite the ongoing unmet need for HCBS, which is expected to grow with the increasing senior population, states regularly cite workforce shortages as a barrier to expanding HCBS.”
Supporters of Biden’s original proposal say the $190 billion figure reached by Energy and Commerce is inadequate to sustain access and stabilize the workforce.
A group called Healthcare Workers Access reports that the West Virginia service population includes 66,000 residents who need assistance. And 280,000 caregivers in West Virginia provide 240 million hours of care to family members age 18 and over. West Virginia will need to fill over 28,600 additional home care job openings by 2028.
Rep. David McKinley, R-W.Va., serves on the Energy and Commerce Committee. He did not comment on the HCBS portion of Build Back Better, but opposes the package and its $3.5 trillion price tag as a whole.
In comments focused on the other aspects of Build Back Better, he said, “This $3.5 trillion partisan spending spree will be paid for by the largest tax increase in American history. Just as bad as the price tag and massive tax increases, are the far-left priorities included within. The bill aims to eliminate coal and natural gas from our energy mix. It will raise energy costs on families and businesses. It will result in more government-controlled health care and removes protections against taxpayer funding of abortion.”
Sens. Joe Manchin, D-W.Va., and Shelley Moore Capito, R-W.Va., emailed statements.
Manchin’s office said, “Sen. Manchin was proud to support the historic $12.7 billion Home and Community Based Services expansion in the American Rescue Plan, which will help our most vulnerable West Virginians get the support they need during the COVID-19 pandemic. Unfortunately, not a dollar of that funding has been distributed to date. This is a clear example of why Sen. Manchin believes there is no rush to pass a $3.5 trillion reconciliation bill when West Virginians are still waiting on funding from previous packages. The $12.7 billion already provided for Home and Community Based Services is eligible through March 2022. A strategic pause is necessary to make sure we get this right.”
Capito said, “I have always made it a priority to work to provide the resources that support access to the quality care and health services West Virginians with disabilities rely on. Oftentimes, the best way to do this is through home- and community-based health services, as opposed to institutional care. As just one example, I recently announced grant funding that will give our states needed resources and flexibility to help improve the quality of health care and drive down costs for West Virginia’s seniors and people with disabilities.”
She continued, “The wish list items included in the $3.5 trillion reckless tax and spending spree, which isn’t even finalized yet, haven’t been debated here in Congress. Instead, Democrats are forgoing the committee process, regular order, and all basic logic to get their massive tax and spending bill passed that will further fuel President Biden’s inflation crisis and burden our grandchildren with debt for years to come.”