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Programs to support independent living are in short supply, experts say

Norman Transcript - 8/25/2017

Aug. 25--NORMAN -- Gail Dunsky was born with cerebral palsy, which affected her motor control and ability to speak clearly. As a child, she was institutionalized, suffered abuse and was often treated as mentally incapacitated, even though she wasn't.

Somehow, Dunsky managed to rise up and do the impossible, even when friends and family doubted her.

Dunsky attended college, earning a B.A. in psychology and an M.A. in human relations from the University of Oklahoma, lived independently in an apartment much of her life, advocated in Washington, D.C., for the Americans with Disabilities Act and faithfully attended St. Stephen's United Methodist Church.

"She fought for everything that she had," friend Leslie Bohon-Bothwell said. "She determined early on that she was not going to be a victim and she was going to strive to do whatever anyone else could do."

Dunsky's stubbornness to live independently and earn a living may have been what enabled her to live decades beyond doctor's predictions. Born in Chicago in 1945, Dunsky died on May 4, 2008, at Grace Living Center in Norman.

Dunsky's life was full of challenges the average person will never know. It took her 30 minutes just to brush her teeth, but she often had to manage on her own or ask for help from friends because of the difficulty of finding and keeping personal care attendants. At one point, a personal care attendant stole her computer, severing a vital link to the outside world.

That's a story heard all too often, said Jeff Hughes, executive director of Progressive Independence in Norman, a private nonprofit organization, staffed and governed by a majority of people with disabilities.

Part of the problem, Hughes said, is low pay and provider shortages mean consumers like Dunsky often don't have a lot of choices when hiring people to come into their homes. And while federal laws have allowed more people to leave the warehouse settings of Dunsky's youth, many persons with disabilities find it difficult to leave a nursing home setting under the current system, and in the nine years since her death, services to support independent living have actually decreased.

--Consumers choices are limited: Hughes said wages for personal care attendants run as low as $8 or $9 per hour and often don't include benefits, despite that it' can be a very tough job.

"With the rate that the state is paying right now, people are dropping out left and right," he said. "If you don't have that personal care attendant available, that indirectly forces a person into an institution."

Some personal care attendants drive miles to serve several people and have a limited number of hours available to take on another client. And when consumers have few choices, they might have to settle for what they can get, regardless of the caliber of service provided.

"Why aren't we valuing people who come into our homes?" Hughes said. "This is an incredibly important role that people play. When you get a good one and they're underpaid, they may leave for better pay, and you end up starting all over."

Medicaid Expansion in Oklahoma would have made it possible to increase services that would allow people to be more self-sustaining and independent, costing the state less in the long run, Hughes said.

Instead, funding cuts imposed by the state legislature in recent years have limited the availability of services, said Don Hudman with Areawide Aging Agency, a nonprofit that serves Oklahoma, Canadian, Cleveland and Logan counties.

"Medicaid is a challenge in and of itself because you have to accept the service that the state offers, and many times those services are -- from an advocate's point of view -- second class," Hudman said. "If you don't have sufficient funds, you don't have nearly the choice that people of means do."

Consumers with disabilities are also limited in which doctors or dentists participate in Medicaid plans and what services are provided in the network, and that's driven by the provider rates and the priorities of the state, Hughes said.

"Anybody, if you're paying for something out of your pocket, you have a choice and if you don't like this person, you go to someone else," Hughes said. "That same methodology needs to be applied within the whole long-term care, Medicaid system."

--Cycle of poverty: More than one in five of U.S. working-age civilians with disabilities were living in poverty in 2015, according to the 2016 Disability Statistics Annual Report. If a poverty level of 21.2 percent sounds high, consider that only 34.9 percent of people with disabilities in the U.S. ages 18-64 and living in the community were employed in 2015.

Like Dunsky, Hughes said many people with disabilities want to work and pay taxes. The road to independence is a bumpy one in Oklahoma, however, as funding cuts have blocked the passage for many who need select services to get there.

"We spend approximately 70 percent of long-term care Medicaid in nursing home placement while only about 30 percent is spent on community services, so that's the challenge the state has in meeting the intent of the Olmstead decision," Hughes said.

That Supreme Court decision requires states to fund the most-integrated setting for persons with all types of disabilities, including physical, intellectual or mental health disabilities, he said.

"If you look at the percentages of what is being spent and whether the state is implementing the Olmstead Plan, which was adopted by the state in 2006, nothing is being done," Hughes said.

Job training, transportation and help from personal care attendants are crucial services to support independence.

"Just because you have a disability shouldn't mean that you have to live the rest of your life in poverty," Hughes said. "Because of how stringent this state is with its Medicaid services, people live on last month's check and never achieve the ability to reach their earning potential."

Medicaid qualifiers also keep people in poverty. If someone becomes disabled, the first stop after a serious injury or illness may be long-term care in a skilled nursing facility, but Medicaid won't offset those costs as long as the person has cash assets.

"You can have a car and you can have a house, but you can't have any cash," Hughes said. "Cash in the bank is limited to $2,500."

Those cash limits make it difficult to transition from the nursing home to the community. Fortunately, the Medicaid 1619B program allows people to stay on Medicaid and go back to work.

"In that program, people can earn up to $30,000 a year and still retain Medicaid services, but most people don't know much about that," he said. "That program isn't promoted."

Medicaid Buy-In is another program that the state could participate in and create a process where a person could buy in and continue their Medicaid health benefits on a sliding-scale basis, but Oklahoma has not opted into the program.

--One program doesn't fit all needs: "From my experience, this one-package-fits-all has been thrown at people and the state hasn't done a very good job of dealing with younger folks," Hughes said. "What I experience through the Advantage Waiver program is the services are incredibly limited by the choice of providers, No. 1, but the package of what the person can utilize is limited. For younger folks, it doesn't really meet the need."

In 2015, of the U.S. population with disabilities, just more than half -- 51.1 percent -- were people in the working ages of 18-64, while 41.2 percent were 65 and older, according to the 2016 Disability Statistics Annual Report.

Population rates of disability increase with age. However, 10.5 percent of the population ages 18-64 had a disability, while 35.4 percent of people ages 65 and older had a disability.

However you measure it, services for those disparate age groups are essentially the same.

"If you look at adult day care centers, you will see both populations of people with disabilities and of older adults, but the needs of people with disabilities are often quite different than that of the older adult," Hudman said.

The Oklahoma Department of Human Services has cut funding for adult day care over the course of the last four years, Hudman said, but that option has allowed many people to stay home rather than forcing them into nursing homes, a costly alternative.

"Two-thirds of those in nursing homes are on Medicaid in our state," Hudman said. "We fought long and hard for years to get the Advantage Program where people can get services in their home and stay home and stay independent and save money, but that program has been underfunded for too long."

Hudman said investing in independent living solutions saves taxpayer dollars.

"The Oklahoma taxpayer share of having an older adult in a nursing home is $50 a day, or $1,500 a month," Hudman said. "For less than $1,500, we can provide a meal to the home of an older adult for a year."


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