For some Idahoans with a disability, my entire independence relies … – Idaho Capital Sun

This story was first published by Idaho Reports on Nov. 10, 2023.

Shiloh Blackburn knows she cant live without community support workers.

She knows she needs them to live independently in her small Pocatello apartment, along with her two cats, Saga and Excalibur.

What she doesnt know is whether the state and the Legislature understand the magnitude of that problem.

Blackburn agreed to spend an afternoon withIdaho Reportsthis summer to demonstrate why she needs the direct care workers and her concerns about the shortage.

Idahos direct care workforce is in crisis, state legislative panel hears

Blackburn, who serves as the chair of the Idaho State Independent Living Council, has cerebral palsy, a disease causing some physical limitations that requires her to use a wheelchair. She also has seizures and a developmental disability. She doesnt want to live in a group home, and she doesnt want to be reliant on her parents. At 48, Blackburn knows her parents are aging and wont be able to care for her the way they did when she was a child.

They help me get up out of bed and into my chair, Blackburn said about support workers. And let me clarify that one part once Im in bed, I cannot get out of bed on my own. Once Im in my chair, I cannot get out of my chair on my own. I have to have help. So if somebody does not come in for a shift, Im stuck.

Two care workers come to her apartment each day, working in shifts, one at a time. They help her get to her wheelchair, help her with hygiene, cooking, getting her medication, running errands, and companionship.

Basically, my entire independence relies on them, Blackburn said.

These problems are not just hypothetical. Recently, a new care worker failed to show up for a shift, leaving Blackburn in the bathroom for six hours, unable to move herself.

Blackburn is on Medicaid and Medicare and uses that funding to pay the care workers. She uses theself-directed servicemodel, so she can hire her own care workers through the budget she is allocated through the government.

The Idaho Office of Performance Evaluations published a reportthis year on the sustainability of the direct care workforce, which estimated 33,000 elderly people and people with disabilities in Idaho use direct care workers. The report estimated the state needs at least 3,000 more direct care workers than are currently employed, a problem that will only get worse.

In September, the Joint Legislative Oversight Committeeheard from membersof the disability advocacy community, who shared some of their stories of being unable to find consistent care. Some of those experiences prompted tears from committee members.

Idaho Department of Health and Welfare Medicaid Division Administrator Juliet Charron knows the issue around the shortage of direct care workers is a problem, and the Medicaid pay rate is a central cause.

Many factors go into their rate review process and home and community-based services we know, I think, have been long overdue for some rate increases, Charron said. The Legislature has appropriated a number of rate increases over the past two sessions, which has been great, but I think it has scratched the surface of probably what needs to happen.

Charron said the COVID-19 pandemic exacerbated the problem, as jobs at places like Amazon or fast-food restaurant chains started paying higher wages.

One of the things that concerns me the most is that caregivers are not paid as much as other fields of work, Blackburn said. Right now, my caregivers, they dont have benefits, they dont get paid time off, they dont get holiday pay, because thats not in my budget. They really are hardworking and they really care about me and want to make sure I get the care I need. But at the same time, they have their own lives to live and they have their own needs.

For Rochelle Larsen of Rigby, direct care workers help her take better care of her family. She has five children, two of whom have a disability. Her 14-year-old son, Abraham, is diagnosed with oppositional defiant disorder, attention-deficit hyperactivity disorder, a mental disability, and an intellectual disability. Her 10-year-year daughter, BrynnLe, has Down syndrome.

Her family uses Medicaidsfamily directed support servicesfor the two children. Abraham gets 10 hours a week with a habilitation interventionalist through an agency. Abraham and BrynnLe also have some hours during the week with a support services worker, who helps the family care for them.

During the last couple years, weve seen an increase in turnover, for sure, Larsen said. Like, being on a waitlist to even get services. In the past year hes had four different people work with him, and hes had about four months without anybody being able to work.

The lack of routine is hard for children with special needs, Larsen said. When Abraham is without a worker, he struggles with behavioral issues.

It feels like we make a little bit of progress and then the worker changes or leaves, and it feels like were starting all over again, Larsen said. It gets frustrating as a parent to see your child make some progress and then regress.

Her daughter has support workers who work on goals with BrynnLe while her parents take care of other family needs.

We cant pay what other businesses are paying, so its really difficult to keep workers at a steady rate, Larsen said. Most of ours have another job and so their hours are very limited to be able to work with our children.

The Larsens try to make the workers feel like they are a part of the family, and they try to supplement the budget when they can, sometimes bringing a care worker on vacation with the family.

Larsen said workers also help give parents of disabled children a brief break.

Were with our children all of the time, said Larsen, who stays home with the children. So when youre always doing something for someone else, its nice to have somebody else come and youre able to get a break and be able to rejuvenate yourself and youre able to come back and be a really good parent for your child.

Larsen stressed that paying direct care workers more is vital to addressing the shortage.

It is an exhausting job. Its hard to work with individuals with disabilities, Larsen said. Its either physically hard, (or) with our son Abraham, its mentally and physically draining. So to be compensated for that work would be amazing.

Larsen also argued that care workers should be treated with more respect, rather than glorified babysitters.

They are doing a lot more, Larsen said. They are working on goals and outcomes and trying to help our children be able to contribute to society.

The Department of Health and Welfare hopes to streamline training for agencies that employ new direct care workers, as employees leave, and they hire replacements.

Health and Welfare Director Dave Jeppesen told the states Joint Legislative Oversight Committee in September that the state has increased the Medicaid reimbursement rates to home and community-based services in recent years. This allows for care worker pay increases. In Fiscal Year 2023, the Legislature gave the health department $230 million for rate increases, and in FY 2024, the Legislature appropriated $25 million to the health department for rates. In the pending budget request for FY 2025, the department is asking for an additional $46 million.

The Division of Medicaid also hopes to promote a campaign for the direct care workforce to encourage people to pursue it as a job option.

Charron said the department also hopes to partner with stakeholders for recommendations.

So were looking at recommendations beyond just rates, Charron said. And so I want folks to understand that that its not going to happen overnight. Solutions dont happen overnight. It is beyond probably just Medicaid, but it is something that definitely deserves and needs attention.

She said that applied to home health care, but even direct care staff at an institutional level.

Its a national crisis; its an Idaho crisis. Today, peoples lives are being impacted every day, Charron said. Having available direct care staff, again, kind of across that continuum of potential services, literally is a lifeline for many people. These are the supports that keep them safe to reside in their community.

Charron knows of facilities struggling to keep doors open due to staffing, and disabled people who are showing up at emergency rooms because they need care.

But if someone is able to reside safely and independently at home, in the community with some supports, that is where we want to support them to be for their quality of life, Charron said. And from a state perspective, too, it is more economical to support someone in the community than at that institutional level of care.

During a recent Our Care Cant Wait Coalition legislative luncheon, Senate Speaker Pro Tem Chuck Winder toldIdaho Reportsthe issue is on lawmakers radar.

I dont think theres any doubt that itll be discussed and brought up, he said. Its just a matter of whether some solution is brought forward or not.

So, theres going to have to be, through JFAC and through the germane committees, work done on these issues and try and figure out what makes the most sense and how to move forward, Winder said. I think theres a recognition finally, through the OPE report and others, that theres a problem and it needs to be solved. Its basically a problem all businesses have, and thats how do you pay people and attract them to do the services that are needed in the community. Whether thatll get done or not, I dont know. But itll certainly be advanced and discussed and Im sure theyll be hearings about it.

Larsen pointed out that everyone may be disabled at some point. Whether its after an accident, illness, or through age, most people will eventually need care.

How would you want to be treated when you have an accident or you are elderly and become disabled? Larsen said. How do you want to be treated? Who do you want to be taking care of you? What training do you want them to have? Do you want them to be paid well so that they care about their job and they love what theyre doing? I think everyone should think about that.

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For some Idahoans with a disability, my entire independence relies ... - Idaho Capital Sun