Covid-19 exposed the ugliness of institutionalization of elderly people and people with disabilities. Exploring alternatives has never looked so possible.
I write this from my wheelchair in my shared facility room, and with a heart full of hope. Could I be going home soon?
Part of Biden’s $400 billion for Long-term Care Services will be spent on home and community-based alternatives (HCBS) that seek to provide caregiver help to people who need significant assistance- at home as opposed to in nursing homes or group homes.
Services can include home visits from nurses or occupational therapists; assistance with personal care; attendance at adult day centers; help with cooking, cleaning and other chores, and more.
I require ADLs myself: activities of daily living. I’m a C4 quadriplegic. I’m completely paralyzed from the shoulders down and I need assistance bathing, dressing, getting in and out of bed, eating, ect. I need some help living.
There aren’t any HCBS services near me that provide that kind of help. That’s not surprising. We’re a small community and we’ve got our mandatory nursing home.
Here in rural AZ I have only the option of a facility. I must sacrifice my freedom and miss my home and family.
If your first question is “Why doesn’t your family just do your care?” you haven’t been paying attention.
Currently, 53 million family members provide most of the care that seniors and people with disabilities need. They are mostly daughters and many have put their own careers on hold. This is really hard on families!
Using my little family as an example, my own parent’s poor health keeps them from caring for me. My daughter did my care while going through high school which was no roll in the park, and now she is a busy teen mom.
Wait, doesn’t Medicaid help?
Some family member caregivers are paid some hours through Medicaid, if your income is very low. Currently these wages still average $12 and these hours are often inadequate. Also, they only allow certain family members to be paid. They wouldn’t pay my daughter while she was a teenager nor pay my own parents, had they been able to care for me, or my husband, had I been married.
Without Medicaid, annually families may spend thousands on care. The hourly cost for a private home health aide averages $24. Annually, assisted living centers charge an average $51,600, while a semiprivate room in a nursing home goes for $93,075.
Medicaid is supposed to pay for both home and community-based services and services provided in institutions such as nursing homes.
But while institutions like nursing homes are mandated by the federal government , home and community-based services are provided at the discretion of the states.
States can set caps on enrollment in home based programs and target HCBS to certain populations . For example, services maybe provided for people with developmental disabilities but not people paralyzed from spinal cord injuries.
Half of the states spend twice as much on institutional care as they do on community-based care.
As a result most states have waiting lists for home and community based services: 820,000 people nationally with an average wait time of 39 months.
What legislation can help us get home based services?
Senator Elizabeth Warren said,
“We must make HCBS a mandatory benefit in Medicaid and expand Medicare to cover more at home, long-term care services. And we should force private insurers to commit some of their billions of dollars in profits to covering long-term care. Health care -including access to long-term care, provided to people in their homes and communities, should be a right not a privilege.”
The HCBS Access Act proposed in March would make HCBS funding mandatory, and create standards and minimums for what home disability services. It would eliminate waiting lists for home- and community-based services.
Now Biden wants to do that with 400 billion of the infrastructure bill expanding HCBS.
This won’t include important structural reforms, though. We need to shift existing dollars away from nursing homes.
The plan does aim in part at caregiver pay.
When thinking about how HCBS can be improved, decreased turnover would be great. Higher pay would help entice a workforce. According to the US Bureau of Labor Statistics, in 2019, home health and personal care aides earned median wages of $12 an hour.
If becoming disabled has taught me one thing it’s that caregivers need more than $12!
Biden’s plan alone can’t transform caregiving jobs into “middle-class” or “well-paying” jobs with benefits. Not while simultaneously expanding access to benefits and scrapping a waiting list of more than 800,000.
The American Families Plan is expected in the coming weeks, to boost the caregiving workforce by increasing pay for direct care staff.
While increased wages will entice a workforce, increasing Medicaid aides’ hourly pay to $20 could also hurt families who pay for care themselves and would be forced to increase pay.
I know people who have spent their savings on care and sold their home for care, and many that brought their assets down to $2000 to qualify for Medicaid .
Many people with disabilities hire informal caregivers in the shadow economy, without any protections for employer or employee.
Not getting the care we need endangers our health, mentally as well as physically.
Some nights I would be up past midnight waiting on a caregiver with a partying problem. My alternative was my own daughter, exhausted and in finals.
There are a billion scenarios that lead to breaking points and eventual institutionalization for millions of us. I’m 38 years old. This isn’t my style even if I’m a quadriplegic.
Will Biden’s plan change my situation?
Biden’s proposal doesn’t specify how the $400 billion would be spent, beyond stating that access to home and community-based care would be expanded and caregivers get a raise.
The plan doesn’t say what portion of funding should go to strengthening the workforce and what portion should be devoted to eliminating waiting lists and expanding services, nor address inequities of the current system like the lack of accessible services in rural counties that I face.
Also, family caregivers, paid or unpaid, shouldn’t be the only option. Leaving out people with disabilities who don’t have family for Medicaid to hire sure wouldn’t help me much.
Finally, the plan doesn’t address increasing the number of Medicaid hours of home based care to the level people need. States currently get to choose that and I get 40 but need twice that.
At least we have started somewhere, but the list goes on!
We must also address huge gaps in the system for middle-income families. We need tax credits for caregivers. We need expansion of Medicare’s home health benefit and removal of the requirement that people receiving Medicare homecare to be homebound .
Every state should have Medicaid expansion. We also need assurances that Medicaid won’t be block granted because people with disabilities could rbe shorted when there are spending cuts.
Remember too, Medicare’s Hospital Insurance Trust Fund is forecast to become insolvent in 2026. We will need solutions to the broader issue of Medicare funding. Care for people with disabilities might better be handled separately, or alongside Social Security Disability Insurance.
Also Biden’s proposal is a one-time eight-year cash infusion paid for over 15 years and it doesn’t provide any long-term solution.
More funding for existing Medicaid services also will not help the countless individuals who exceed strict Medicaid eligibility criteria.
Moving to a Medicare-for-all system would eliminate existing state variation in favor of uniform coverage of HCBS for all Americans. Unlike Medicaid, HCBS would be required and explicitly prioritized over institutional services under current Medicare-for-all proposals.
So is this home and community-based services expansion going to change disabled lives?
My opinion is, we’ll just have to see.
Maybe soon I will be home again, doing ADLs with my well-paid caregiver.