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Feds struggle with getting elderly, disabled back into community

A multibillion-dollar federal initiative to move low-income elderly and disabled people from long-term care facilities into the community has fallen far short of its goals, as many states have struggled to cobble together housing and other services.

Launched in 2007 during the George W. Bush administration, the states initially projected placing 35,380 Medicaid recipients in the first five years. As of March 31, at least 22,500 had made the transition, about 36 percent below the states’ goal.

The numbers vary sharply by state. Some, such as Texas and Ohio, have helped thousands find homes in their communities. Others, including North Carolina, Missouri and Kentucky, have moved fewer than 500 each.

In California, only 827 people have made the jump since 2008, although the state was awarded $41 million during that time. “We’re not doing a good job of it here,” said Deborah Doctor, legislative advocate for Disability Rights California. “It’s pathetic.”

Some states have found it especially difficult to move the elderly. While the vast majority of eligible people are seniors, only about one-third of the program’s participants are age 65 or older, according to Mathematica Policy Research, a Princeton, N.J.-based firm hired by the government to evaluate the project.

While advocates strongly support the program and its goals, many say they are disappointed with what they see as its glacial pace, given the $4 billion that Congress has authorized and the fact that about 900,000 people living in institutions meet the eligibility requirements.

“It’s very frustrating to us,” said Kate Ricks, who heads Voices for Quality Care, a multi-state long-term care advocacy group based in Maryland. “At the rate they’re getting people out, everyone who is eligible will be dead.”

Officials from the federal Centers for Medicare & Medicaid Services, which administers the program, acknowledge that it was tough for many states to get rolling; some states didn’t start until 2008. But they say the pace has picked up – placements have doubled in the last few years.

“We’ve transitioned individuals from nursing homes who have been over 90 years old and have been able to serve them extremely well in the community,” said Ron Hendler, CMS technical director for the program. “They have been very complicated transitions, but we’ve been able to do them – and very successfully.”

To participate in the program, a person must express interest and be enrolled in Medicaid, the state-federal program for the poor and disabled. Counselors help coordinate their move into houses, apartments or group homes of four or fewer residents – or, in some cases, assisted living facilities.

The program, called Money Follows the Person, offers states extra Medicaid funding to pay for the participant’s home and community-based services over 12 months, as well as furniture, security deposits and renovations to make housing accessible to the handicapped.

Despite the assistance, there are barriers to moving many people, because of complex medical needs, lack of services in the community and few housing options.

Wayne Cook of San Leandro, Calif., struggled to find a place to live.

Cook, 56, suffers from polymyositis, an inflammatory disease that attacks the muscles. He was living in a nursing home when he signed up for the program.

His transition counselor gave him a list of apartments, but many had been rented months earlier. “I just started getting on the bus and looking for places on my own,” said Cook, who uses a wheelchair.

Cook said it took him more than six months to find a landlord who would accept his Section 8 housing voucher. He finally moved into a one-bedroom apartment that wasn’t handicap-accessible but was on the first floor.

“Man, it’s kind of hard to describe what it was like to go back to an apartment,” he said. “I had come a long way from people telling me I was going to be bedridden for the rest of my life. I can’t put it in words what it felt like to get my own door key again.”

Cook said the hardest part for him has been dealing with tasks such as paying bills and grocery shopping.

That’s a common concern for people transitioning out, said Robyn Grant, outreach director for the National Consumer Voice for Quality Long-Term Care, an advocacy group.

“Nursing home life is very regimented,” Grant said. “You go from everything being decided for you to it being wide open. A number of people said getting used to that was a big adjustment.”

Some participants end up returning to nursing homes and institutions. CMS officials would not release those numbers to Kaiser Health News.

For participants who remain in the program, once the year ends, the states are expected to use their Medicaid dollars to continue paying for the participant’s day-to-day services, such as home health, case management and personal care.

States are also required to take some of the Medicaid funds they’ve gotten for Money Follows the Person and reinvest them in long-term care services, shifting spending from institutional to home and community-based care. The idea is to help keep people out of nursing homes and institutions from the start.

In 2005, Congress authorized $1.75 billion to fund the original five-year project in 30 states and the District of Columbia. In 2010, Congress authorized another $2.25 billion for the program under the Affordable Care Act and extended it through September 2016. Thirteen more states won grants last year, bringing the total to 44.

So far, the federal government has paid or committed to pay $1.1 billion to the states, according to CMS officials.

Even now, a handful of states are responsible for the bulk of placements. The biggest by far is Texas, which was awarded $123 million for the first five years of the program and by the end of 2011 had moved out 5,298 people.

Texas officials say their state already had been operating its own version of Money Follows the Person starting in 2001. “We had earlier experience and looked for the barriers and how to address them,” said Marc Gold, manager of Texas’ Promoting Independence program. “I think other states having problems probably didn’t have an infrastructure at all.”

Some states are struggling. Joel Weeden, who runs the program at the California Department of Health Care Services, blames much of the problem there on the logistical headache his agency faces because it contracts with a network of two dozen local agencies responsible for transitioning people.

“We did not have an existing statewide system in place for coordinating home and community based services,” Weeden said. “California has a fragmented system.”

In a few states, Money Follows the Person never even got off the ground – or ended abruptly.

In Florida, lawmakers last year didn’t give state officials the authority to use their $35.7 million grant award because the funding was authorized under the Affordable Care Act, which the state is challenging in federal court.

One area that Congress didn’t address when it authorized Money Follows the Person was whether it would save money.

In a February review, Mathematica found that the cost of community-based long-term care services is 34 percent lower than what Medicaid programs typically pay for nursing home care. But the study was inconclusive about whether Money Follows the Person is saving taxpayer money because it did not assess the cost of medical care for people living in the community.

“We have not made that determination. We feel it’s a little too early,” said Mathematica project director Carol Irvin. “Don’t construe that it saves money to have someone in the community.”

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