October 19, 2021
Holly Carmichael, CEO
Almost every one of us will end up with a disability or long-term health needs. Whether it’s from aging, health complications, or something we’re born with, some day at least 70% of us will need assistance to live our lives. We talk about this in depth in our discussion with Judy Heumann in Episode 01 of the Disability Garrison Podcast (check it out here). But I wanted to take a deeper dive into why this matters here and now.
Because my question is: Once we need assistance, what will our lives look like?
You’re 87 years old. You live in an assisted living facility.
Your family lives across the country, and you spend most of your time alone. Every morning, noon, and evening, a care assistant arrives to check on you. Sometimes, if the facility is really busy, she ignores your requests to help you to the bathroom. You end up having to go in your own bed.
This is what most traditional care looks like. And stories like this happen every day.
You’re 87 years old. You live in your own home and community.
You hire those two really nice young people from next door to give you the support you need, and an FMS takes care of all your paperwork and taxes. You (and your niece, who is your employer of record) pay close attention to your health and choose what services you like to receive.
This is what self-directed support through Home and Community Based Services (HCBS) looks like. And many people are making this their story.
What is HCBS? Learn More at CMS.gov
How HCBS Affects Our Future
Ok, so why doesn’t everyone choose self-directed HCBS programs? It sounds like an easy decision. Well, it all comes down to three big issues: funding those services, finding reliable caregivers, and explaining to people what the hell self-direction and HCBS is anyway.
If we want to maintain our freedom and independence, then we need to make sure we get these three HCBS issues worked out. It’s not something we can keep pushing off until later. (And I’m talking to myself here—every day, I wake up achier.)
HCBS services are available across the United States, both for people who are aging and for people with disabilities. But because of funding issues, not everyone can get access to HCBS, and in some cases, the waiting lists can take years. Another issue is finding reliable caregivers, who are in short supply and often experience burnout.
So let’s break this down.
Building on HCBS Funding With the Better Care Better Jobs Act
The Better Care Better Jobs Act will boost HCBS funding by billions of dollars over the next 10 years. It will build upon the short-term bump of $12.7 billion in funding through the American Rescue Plan passed in March 2021.
The American Rescue Plan (passed during the pandemic), made strides toward increasing access to service right in your own home. But it put a time restriction on that increased access (April 1, 2021 – March 31, 2022). We need this increase to be permanent—but HCBS needs more funding to do so. And the Better Care Better Jobs Act is how we can get there.
Numbers for People Who Like Math
The Better Care Better Jobs Act would inject a significant portion of President Biden’s proposed $400 billion investment into HCBS. It would make the 10% Medicaid matching boost permanent for states delivering HCBS. An “enhanced” federal match of 80% would be applied to administrative activities that aim to improve HCBS.
Avoiding Shortage and Burnout With HCBS Caregivers
As someone who is both a caregiver for my daughter Maggie and a CEO, I can attest: caregiver burnout is real. Caregiving is hard work—and it carries a lot of the same stress and risks of a job in the medical field. The pandemic has made us even more aware of how caregivers are often expected to do front-line work without front-line benefits—which is why there’s a caregiver shortage.
Friends and Family Can Be Paid Caregivers
Allow friends and family to take care of friends and family. And give them damn good pay and benefits to go with it. Friends and family are already providing care—just without pay. This opens the door for more people to become professional caregivers. Because while caregiving is hard, it’s also incredibly beautiful and rewarding to support the people you love.
Better Care + Better Jobs = Better Access
This brings us right back to the Better Care Better Jobs Act. If building on HCBS funding gives us better care, then increasing caregiver access, pay, and benefits give us better jobs. And more caregivers means reduced time on waiting lists for many people (and goodbye caregiver shortage).
Learn More About Caregiving
Disability Garrison – Episode 01: Personal Assistant Services With Judy Heumann
Why Now Is the Time to Take Action
In order to get better care and better jobs through HCBS, we need more funding. But this increase in funding for HCBS was cut from the recently passed bipartisan act (Infrastructure Investment and Jobs Act). So what now?
The budget for fiscal year 2022 is currently under debate in Congress. Instead of making a half-assed attempt to slip HCBS funding into a bipartisan act, we should strategically build it right into the budget. But in order for us to get it in the budget, we need to take action before it’s too late.
3 Quick Ways We Can Take Action
- Get in Touch With Your State Representative
Let your reps know that that HCBS funding should included in the 2022 budget. Find your representatives here.
- Tune into the Disability Garrison podcast
We tackle all sorts of HCBS topics, from personal assistant services, discrimination in transplants, and even what you shouldn’t say to people with disabilities. Every episode has simple action steps, so you can make a difference in less than 5 minutes. Check out the podcast and give it a follow on your favorite platform.
- Talk About HCBS With Others
Many people don’t even know that getting support in their own home is even an option. It’s up to us to increase awareness. Share this explanation on self-direction/HCBS.
From the desk of