TREASURE VALLEY — Medicaid’s Adult Developmental Disabilities (DD) Services gives thousands of Idahoans access to the care they need to live.
When the government talks about cutting or capping dollars, anxiety wells up inside many adults who use the DD waivers and their families.
There's no immediate plan to scale back Medicaid spending right now, as was heavily debated in Congress last year. We are told nothing is currently in the works to cut Idaho’s DD program, but KTVB took a close look at some of the Idahoans relying on the services to survive to highlight the program and anxieties surrounding it. This affects thousands with disabilities living in the community - which wasn't an option for many Idahoans until the last couple decades.
The idea of support dwindling looms over many heads whenever health care is debated.
Forty-five-year-old Gabe Baugh had a prenatal stroke that caused him to have an intellectual disability. He grew up with cerebral palsy and epilepsy. But when he was 22 years old, his dad says he suffered from a couple seizures after having a surgery on his neck, causing him to have a hemorrhage in his spinal cord. His injury left him paralyzed.
“Gabe’s level of medical involvement is actually higher than a nursing home level of care,” his father Jim Baugh said, “So they type of care Gabe gets on a daily basis is more typical of what you would get in a hospital.”
His care is constant, round-the-clock and one-to-one, thanks to in-home caregivers.
Twenty-year-old Nicholas Tierney doesn't need that level of care; he was diagnosed with autism at a young age. But thanks to one-on-one supportive services, he's able to live at home, work part-time and be involved in the community.
“He has a support person that goes with him to not only transport him but to support him in anything that he needs as far as in the work environment or classroom environments,” Nicholas’s father, Paul Tierney, said. “We didn't want him to be in an institutional setting. We want him home with us and going to school with his peers and interacting.”
Nick’s ultimate goal is to one day gain independence, like Noll Garcia, who lives on his own in an apartment in Boise - with in-home supports.
“There’s always someone here 12 hours a day,” Garcia said.
Through the Medicaid Adult DD Waiver he’s on a program called Self-Direction, meaning he hires and fires his employees.
“Basically the employees work directly for me,” he added. “Quite frankly I think I do better living the way I do than I do living with family.”
Like Noll, the Baughs and Tierneys choose their own employees.
“[Gabe] has choice and freedom he has control over his life. He decides when he gets up and gets in his chair he decides when it's time to go to bed,” Baugh said. “Having a person to help him is the substitute for being able to operate his own body. And without that he has no freedom of any kind, he has no control over his environment unless he has control over the people who assist him.”
Noll, Gabe, and Nicholas - and thousands of other Idahoans with developmental disabilities - have this freedom through the DD Waiver.
“For people with disabilities, Medicaid doesn't make people dependent - it makes people independent,” Baugh added.
Because their private insurance doesn't cover the services, these individuals tell me they couldn't afford them if not for the waiver.
“There’s no way I could be like, well, they took Medicaid away so I can match out of my own pocket what my care providers make. No way,” Garcia told KTVB.
“This is the least expensive method so far discovered,” Baugh told KTVB. “In order for Gabe to get the services he gets - which actually cost quite a bit of money as you can imagine - we have to prove that it’s still much less money than if he were in an institutional setting.”
“I do not know how we could - sorry to say this, Gabe – I don't know how we could keep Gabe alive without these services. And if he did go to a Long-Term Acute Care facility, I don't know who would pay for that. If Medicaid doesn't pay for it, who will? My insurance doesn't cover that kind of thing,” Baugh added.
The program is optional for states to provide and when Medicaid funding and entitlements are debated in government, people we talked to with disabilities who rely on these services worry Idaho could get less federal money.
“If Medicaid is block-granted or capped, then the states either have to come up with the money to supplement or states have to cut the optional services,” Baugh said. “It puts the states in a bind.”
Republican State Rep. John Vander Woude sits on the House Health and Welfare Committee and says they would support block-granting Medicaid.
“So often we run into federal guidelines or it has to be this or that. It doesn't necessarily fit in what we want to do but we have to do it the way the federal government does because that’s the only way you can get the money,” Rep. Vander Woude said, “If we do block grant, we'll have some more flexibility and we can tailor the program to where the needs are in the state rather than tailor it to one size fits all on a federal basis.”
He says if Congress does block grant Medicaid it will be population- or needs-based, Idaho must evaluate what services are necessary, what are the best uses for that money, and where the needs are.
“There might be less money but I think it might be better used; it depends on how the federal government designs block grants,” Vander Woude added.
While it's an optional program, the Developmental Disabilities waiver isn't one the representative recalls being on the chopping block in committee - even if the federal government allocates less money to the state for Medicaid. He says he hears these fears during legislative sessions, but doesn’t believe they’re fully justified.
“I’ve not – that I can recall – heard of cutting. I’ve heard more requests of increasing funding for the disabilities rather than any discussion of cutting,” he added.
KTVB reached out to our congressional delegation for their thoughts and heard back from Sen. Risch and Sen. Crapo. In a statement, Risch’s office said:
“The solvency of Medicare and Medicaid has been an ongoing point of discussion in Congress, but Senator Risch does not know of nor has he heard of any efforts to reduce funding for those programs. He has and will continue to advocate for reforms that will ensure the programs are sound and sustainable so that future generations of Idahoans will receive benefits. Participation in specific programs or waivers within Medicaid is decided by the states not the federal government.”
Sen. Crapo said in a statement:
“The Medicaid program is an essential safety net for thousands of Idahoans. While I am unaware of any efforts to alter the funding structure of Medicaid, should Congress consider Medicaid reform, any changes must continue to allow providers and patients to decide the best options for treatment.“
Still, many dealing with the program say they're overcome with anxiety each year as they have to re-apply for eligibility; they fear their individual budget could shrink and they could lose some hours of care.
“You’re kind of always like living in this state of flux, you're worried about what’s going to change, if there’s going to be a change in the Medicaid system, if he is going to qualify if something does change and is that support going to change, is his lifestyle going to have to change?” Tierney said.
The Baughs and Tierneys say they can’t provide all the care themselves, which is why they need in-home care. They all have jobs, and say they would struggle financially if they had to stay home.
“If you want to work, pay the rent, pay your taxes then you can't spend 24 hours a day taking care of a loved one,” Baugh said.
Without providing care themselves, family members say institutionalized care would be the other - more costly - option.
“If you're in facility level care it’s up to their administration,” Garcia said.
“People deserve freedom, they deserve choice. They deserve the ability to live where they want to and with whom they want to,” Baugh added.