For 30 years the disability services activists of Alaska’s Key Campaign have been holding annual statewide demonstrations in towns like Soldotna — where demonstrators gathered Friday at Soldotna Creek park to chant and wave signs to passing traffic — alongside lobbying events in Juneau to advocate for a program they support as an alternative to state-managed institutionalization: Medicaid’s Intellectual and Developmental Disability waiver, which pays for aid to 2,027 Alaskans with disabilities severe enough that they’d otherwise be forced to live in isolated homes for the disabled.
Denis Haas, president of the Key Coalition’s Kenai chapter, has an adult daughter served by the waiver. Haas — who was with Key activists in Juneau Friday to meet with legislators and Gov. Bill Walker’s staff — said the aid is essential for his daughter’s life outside the home, but maintaining it has required constant activism.
“I get frustrated because the system seems so complicated,” Haas said. “I’ve been doing this for 35 years with my daughter, and it seems like you’re always afraid that what you get today they’re going to take away tomorrow. So the price of oil has always affected the amount of services that are going to be available to people in the state.”
The waiver is managed by Alaska Department of Health and Social Service’s Division of Senior and Disability Services. Relatively little of the $190.6 million cut from DHSS since fiscal 2015 has come from the waiver program, though it was subject to a July 2015 freeze in rate increases and a September 2015 reduction in a legislative mandate that required 200 wait-listed applicants to be added to the program each year.
Possible future changes may cut a little closer to the program’s meat. As a Medicaid service, the waiver is funded half by the state and half by the federal government. At end of fiscal 2016 it had cost $168 million, according to Director Duane Mayes of the Senior and Disability Service Division. Mayes estimated its expenditures would be at $187 million when the present fiscal year ends in June 2017.
“That, quite frankly to me, is concerning,” Mayes said. “That’s why we’re looking at where we can create some efficiencies.”
A proposal DHSS is considering would limit the waiver’s payments for day habilitation, a category that pays for assistance with developing “self-help, socialization, and adaptive skills which take place in a non-residential setting, separate from the home or facility in which the individual resides,” according to the U.S Department of Health and Human Services.
Compared to the other care that the waiver also provides, CEO Roy Schiller of waiver service provider Hope Community Resources said the day habilitation reduction may be “the best within the service categories, because it isn’t directly linked to health and safety.” A cut’s effects would be hard to generalize, he said.
“One person may not notice a reduction in their day-hab services, while for another it may be very significant,” Schiller said. “If a person is using their day-hab just for recreation, that might not have as much of an impact. But for another person that might be the only way they get out of their house, the only way they have any opportunity to come into their community to shop and participate in things.”
The proposal would drop the hours of day habilitation paid for through the waiver to an average 8 hours per week.
Waiver-users presently use an average of 11 hours of day habilitation per week, according to an email from Manager Maureen Harwood of the Intellectual &Developmental Disabilities Unit. Those who live in group homes — whose weekly day habilitation hours are already capped at 15 — average eight hours per week, Harwood wrote.
Day habilitation is the only waiver service that Richard Reger, a disabled adult served by Hope Community Resources in Soldotna, receives. Accompanied by an aid, Reger uses his day habilitation hours to volunteer at Ridgeway Farms, as well as “two laundromats, the hospital, the sports center, the food bank, and Hope Community Resources,” said his mother Teresa Reger.
“He likes to stay busy,” Teresa Reger said. “He’s worked at Ridgeway Farms since he was in high school. He loves doing laundry, so the laundromat’s a natural. … It’s just whatever he likes to do.”
Aide Ben Stimmel of Hope Community Resources accompanies Richard Reger on his volunteer rounds and is paid through the day habilitation waiver component. Stimmel said Reger uses 48 day habilitation hours per week, which Teresa Reger said allows her son to volunteer six days a week. With the cut, she said, he’d likely be down to one.
“To me they’re going back to the dark ages, because they’re putting these guys back at home where nobody’s seeing them,” she said.
Mayes said the proposed 8-hour limit would be a “soft cap,” negotiable for individual cases, as is the 15-hour cap presently in place for those living in group homes.
“We’re going to establish very specific criteria that we’re going to use to award someone above and beyond eight hours per week,” Mayes said. “They’ll have to follow that criteria, so it’s just our way of getting better controls around that.”
Mayes estimated that four or five years ago, spending on day habilitation waiver services was around $20 million, and that by the end of this fiscal year it would be around $45 million. He said the increase could be attributed both to more people entering the program and others not leaving it.
“The intent of day habilitation is really to teach the skills of integration and independence through active teaching exposure to community settings,” Mayes said.
“So, taking the individual out of their residential setting and into the community and teaching the necessary skills they need to minimize the number of hours we are spending for day habilitation. But what’s happening is we’re not seeing a reduction of hours from year to year. … Although I can understand the need for day habilitation, it was never intended to be a permanent solution. We’d like to see from year to year a reduction in the number of hours being requested, so the provider is doing their part to teach the necessary skills for this individual to be able to do as much as possible independently in their community.”
Mayes estimated the cost of day habilitation to be around $42 per hour — which he said is reasonable, if it accomplishes the goal of gradually moving a recipient out of the program.
Teresa Reger said the goal of Richard’s volunteering is for him to develop “natural supports” for his independence.
“That’s people outside the family,” she said. “That’s like people at the grocery story who know him. Or the doctor’s office, the dentist’s office — we can send him in there and know he’s going to be safe because the people know him. Those people are what we call naturally supports. If they’re not out in the community, they’re not going to have those natural supports.”
Harwood said day habilitation would be accomplishing its goal if it can do this.
“What we can do is help people remember the purpose of the services, and what we value as an employment-first state, and where we want to see our participants in our communities — fully included members that are well-supported, not just by paid staff; well-supported in every environment and every realm,” Harwood said. “Sometimes people end up with a paid support staff as their only resource, and that’s not the purpose of the waiver. It’s about integration and independence.”