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A 1999 ruling helped Edwards move out on his own. Federal law says a diabled person can't be held in an institution if they can live in the community.



A Better Place To Call Home
By LINDSAY PETERSON and VICKIE BECK The Tampa Tribune
Published: Aug 11, 2002

TAMPA - For years James Edwards dreamed of preparing his own food and washing his own clothes. He was still a young man, and capable, but he wasn't allowed to do those things because he lived in a nursing home.

Now, when Edwards wants a sandwich, he wheels into his own kitchen and pulls the ingredients from his own refrigerator.

Edwards, 34, who is partly paralyzed, found his new home through a special program for people in nursing homes who don't need such high-level care and want more freedom.

``If a competent adult says they are fine living in a nursing home, OK. But if they want to go home, we have to acknowledge that,'' said Dan Newman of the state Health Department's Brain and Spinal Cord Injury Program.

``The issue is determining the most appropriate, least restrictive living environment. And the decision is now the patient's.''

States are under more pressure than ever to focus on the patient's wishes because of a 1999 U.S. Supreme Court decision in a case known as Olmstead. The court ruled that keeping disabled people in institutions is a violation of federal law if they could be served just as well in the community.

The Olmstead case involved two women in a Georgia mental hospital, but federal officials who studied the court's decision say it applies equally to people in nursing homes.

It doesn't, however, require states to make any ``fundamental'' budget changes to pay the costs of these transitions. So during the past two years, the Department of Health and Human Services has spent $125 million to get states moving.

About $4.5 million in state and federal money has gone to the Florida Department of Elder Affairs to help older nursing home residents who are willing and able to move.

Newman's group received $500,000 to work with nursing home residents ages 18 to 55 who have spinal cord or brain injuries.

``Once someone is institutionalized, they lose their goods, income - everything. They become stuck,'' Newman said. ``Without the grant program, we couldn't do anything.''

Both Florida efforts began last year, but this year the Legislature chimed in with laws saying all disabled people, old and young, should receive care in the ``least restrictive environment.'' This applies primarily to people eligible for Medicaid, the state and federal health care program for the poor.

Searching the Medicaid rolls, Florida officials found about 520 older nursing home residents who didn't need to be there. So far, they have moved nearly 400 of roughly 70,000 residents statewide.

All have gone to assisted-living facilities, which offer the help they need with basic tasks such as bathing, but are generally smaller and less controlled than nursing homes.

About 45 people in a 10-county area have qualified for the Brain and Spinal Cord Injury Program. Newman hopes to have all of them moved before the end of next year.

``The key is setting this up for people,'' said Diane Braunstein of the National Governors Association, which has studied the Olmstead case.

``It sounds easy, but it's actually very complicated.''

`Waiting List Is Unbelievable'

Edwards, a former long-distance truck driver, hit his head in a fall about five years ago and injured his spinal cord. Nevertheless, he is strong and capable, needing help only to transfer from his wheelchair into a shower chair.

He remained in a nursing home because he had no family or home in the area.

``He could easily function in a less restrictive environment. He was a slam dunk candidate,'' Newman said.

But it took months to make all the arrangements. The first obstacle was simply finding a low-income apartment; his Social Security disability income is $570 a month.

``The waiting list is unbelievable. In Tampa, forget it,'' Newman said. ``There needs to be two waiting lists,'' one for low-income people with disabilities who have accessibility needs, and one for the nondisabled, he said.

In the end, Edwards chose not to wait and found a roommate to split the $599 a month rent in a conventional apartment. The spinal cord group is using its grant money to pay his first and last month's rent and buy furniture and household supplies. In addition, it's paying for modifications to the bathroom and doorways.

It's the job of Edwards' case worker to make sure he receives a wheelchair evaluation, occupational and physical therapy, and other medical care. Edwards also gets life skills training and access to the vocational rehabilitation system.

``I can't wait to cook,'' Edwards said as he undertook his move last month. ``I can't wait to do my own laundry.'' He said he lost a lot of new clothes to the bleach used in the nursing home laundry.

No Facilities For Younger Patients

Other cases can be even more difficult than Edwards'. Melissa Nichols, 19, relies on a ventilator and a sophisticated, expensive power wheelchair since she was accidentally shot in the neck by her sister's boyfriend.

Grant money will help the family widen the doorways at home and provide a shower bed, an overhead lift system and special electrical equipment, including a backup generator for her ventilator. It's also paying for a voice-activated computer to control the lights, heating and air conditioning, and even the stereo.

``I want to live with Mommy,'' Nichols said. But she feels safe at the nursing home, Sabal Palms in Largo, and is a bit frightened of the potential move.

``They're going to have to wean me.''

What bothers her mother is that if she's still in the home when she's 21, she'll move to the geriatric ward.

``It's unfair. There is no young adult wing, or other facility that will take a vent patient her age,'' said Terrena Nichols, Melissa's mother. ``I can't see sticking her in a facility with 70 and 80 year olds.''

And, although Nichols needs constant attention, Newman believes she's able to make the move.

There are incentives to keep her in the nursing home, though.

One is that if she moves home, at 21 she would begin receiving adult Medicaid home care services. That covers fewer costs than the child services she qualifies for now.

``It's very scary. The services will be drastically less,'' said Terrena Nichols. Still, ``when you're in the home environment with your family involved and friends around, you progress better.''

Leaving Home Can Be Frightening

As enticing as it might seem to leave a nursing home behind, many older residents have turned down the opportunity - even though there's extra money in the elder affairs program to cover nursing and other services they might need at the assisted- living facility.

People make a lot of mental and emotional concessions as they settle into a nursing home, said Sam Fante, an analyst with the Department of Elder Affairs program that screens people to determine whether they need nursing home care.

``They may be resigned to live there the rest of their life,'' he said. ``The idea of moving may be as scary as the prospect of going to the nursing home in the first place.''

Some family members have rejected proposed moves, possibly fearing it would require them to take on extra responsibilities, he said. Sometimes the nursing home puts up a fight.

``Nursing homes are in the business of keeping their beds full. There's not a lot of incentive to discharge people,'' particularly the healthier residents, Fante said.

But the state has a big incentive to move people for whom it is covering the bills.

Medicaid pays nursing homes about $117 per person per day. The daily rate for assisted facilities that take Medicaid is about $28. Payments are even less for adults receiving care at home.

So far, the transfer of older residents from nursing homes to assisted-living facilities has saved the state $4.3 million, Fante said.

Some States Taking Positive Steps

Across the country, states are dealing with the Olmstead decision in different ways, and several have come up with impressive proposals, said Jo Donlin of the National Conference of State Legislatures.

Mississippi has a plan to provide community services to all disabled people who need them by 2011, spending $33 million to $69 million yearly until then. Ohioplans to spend $145 million in 2002-03 to expand programs for the disabled.

Florida has no formal plan, but it's notable, Donlin said, because of a program being expanded statewide called consumer-directed care. Those who qualify for Medicaid and are on the verge of going into nursing homes will be offered a regular cash allowance to buy the community-based services they need to stay out of the nursing home.

``We're seeing movement,'' she said. ``It's slight, but it's promising because it's not limited to either young or old and it looks at more than health care.
``It's about transportation and housing and social services. It's about giving people choices.''

Reporter Lindsay Peterson can be reached at

Reporter Lindsay Peterson can be reached at lpeterson@tampatrib.com or (813) 259-7834. Reporter Vickie Beck can be reached at vbeck@tampa trib.com or (727) 799-7413.

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[This message was edited by seneca on Aug 12, 2002 at 05:31 PM.]