Monday, September 22, 2014

Parents of disabled children to sue state over eight-year waiting list for home care waivers

Posted By on Mon, Sep 22, 2014 at 5:26 PM

click to enlarge EIGHT YEAR WAIT: Parents on Sept. 14 rallied at the Capitol in support of the CFCO - FACEBOOK
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  • EIGHT YEAR WAIT: Parents on Sept. 14 rallied at the Capitol in support of the CFCO
Frustrated with the legislature's apparent reluctance to move forward with the Community First Choice Option (CFCO), a group of some 50 parents are filing a lawsuit against the state that alleges Arkansas's failure to provide home- and community-based care options for developmentally disabled children is in violation of the Olmstead decision of the US Supreme Court. About 3,000 families are on a waiting list to receive a waiver for home/community-based care, some of whom have been on the list for up to eight years. According to Hot Springs parent Teresa Dodson, a claimant whose son has been on the waiting list since 2007, the suit will be filed by the end of September October.

The plaintiffs are seeking to find other Arkansan parents whose children are also on the list. Their attorney, Dana McClain, is herself the parent of a child waiting to receive home/community-based care. 

Meanwhile, this Thursday and Friday, the legislature's Public Health committee may or may not be taking up the topic of the CFCO. If the policy is adopted by Arkansas, it would render the lawsuit moot by clearing the waiver waiting list. CFCO is a federal program that gives extra Medicaid dollars to states that commit to offering a home/community-based care option to developmentally disabled individuals that qualify for institutional care.

Some background: the state guarantees long-term care for a child with severe developmental disabilities under Medicaid, but only if the child is sent to live in an institution. The state maintains five Human Development Centers (HDCs) created to house developmentally disabled persons. While these facilities provide vital services to the 1,500 or so Arkansans living in HDCs, institutionalization is simply not an acceptable option to many parents (like Dodson), even if the government is paying. They want their children to live at home or in an assisted living situation ("community-based care", in the parlance). Some 4,100 families statewide are on a waiver program from the Department of Human Services (DHS) that allows them use Medicaid money to pay for home health care or community — but the waiver program is capped, and there is little movement off of its waiting list.

The CFCO would remove the waiver cap, allowing those 3,000 families to access home/community-based care. Not only does home/community-based care allow for a better quality of life for many disabled people, it's also much cheaper than institutional care on a per-patient basis. "The annual average cost for someone on a long-term care waiver is around $43,000. It costs twice that to stay in an institution," said Dr. Charlie Green, who runs the the Division of Developmental Disabilities Services, the DHS entity responsible for both the waiver program and the HDCs. Green explained that the higher expense of HDC care comes from maintaining a medical facility 24/7, and says adopting the CFCO would save the state $365 million in general revenue over the next 12 years. 

Fiscal conservatives in the legislature dispute Green's claim that the CFCO — which is a part of the larger Affordable Care Act — actually saves money. Rep. Nate Bell, a Republican from Mena, says the CFCO will increase federal spending, even if it decreases the state's revenue burden. This is much the same debate that's swirled around the private option — there's no doubt that expanding federal health benefits under the private option results in a net financial gain to the state of Arkansas, but fiscal conservatives like to point out that Arkansas taxpayers are also federal taxpayers. (They often neglect to mention that, as federal taxpayers, Arkansans are paying for the costs of any expanded federal program whether we reject the benefits of that program or not.) The Arkansas branch of the conservative political nonprofit Americans for Prosperity begins its news release about CFCO with, "Are you ready for more ObamaCare in Arkansas? It's coming."

In addition to fiscal conservatives opposed to the ACA on principle, the CFCO has another set of opponents: long-term care facilities and their allies. Legislators whose districts include HDCs have voiced concern that giving families the option to seek home/community-based care will end up eating into HDC budgets. The Arkansas Health Care Association, which represents nursing homes, has indicated it doesn't support the CFCO either.

Green said "we don’t have any plans to reduce budgets on HDCs…we support the full continuum, which includes everything from HDCs to people living in their own home." However, he conceded, "from the numbers of people in HDCs today, we can see that demand has waned." 

That's surely true. With 4,100 families receiving waivers, another 3,000 on the list, and only 1,500 now housed in an HDC, it's clear that — given the choice — most families would rather keep their children close to home than send them to an institution.

The lawsuit to be filed by Dodson and the other parents is based on a 1999 decision of the US Supreme Court, Olmstead vs. L.C., which said the state of Georgia had violated the civil rights of two disabled women by confining them in an institution for years after they asked to move to a community-based setting. In Olmstead, the court noted that, "confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment."

In 2004, a group of Arkansas parents successfully sued DHS over the home/community-based waiver waiting list itself. At that time, there were 1,800 people on the list; when DHS lost the suit, the state had to scramble to fund waivers for all 1,800 all at once. That suit was filed on narrow grounds, however, and in the years since, as the numbers on the list have built up again, parents haven't filed further litigation until now — in part, said Dodson, because of a perception that the money to fund additional waivers simply did not exist within the Medicaid budget. (Also, many parents believe that DHS has been making a good-faith effort to fix the problem.) 

Now, though, it's clear the money is there for the taking and the legislature isn't moving forward with CFCO. Green has warned lawmakers in the past about the strong possibility of a new lawsuit emerging.

Dodson said that the plaintiffs are on solid ground. If the state balks at implementing the CFCO, she said, it will clearly violate the Olmstead decision. "We’ve already been waiting entirely too long. We should not have to continue waiting," she said.

Last week, activists from a national disability-rights group staged protests in Little Rock in support of CFCO at the offices of gubernatorial candidates Asa Hutchinson and Mike Ross, the Arkansas Health Care Association and Americans for Prosperity

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