Independent Living Part 2
Cliff Seigneur in his new apartment in Golden. (Joe Mahoney, I-News photo)
Yesterday we reported on how the state is struggling to help people with disabilities live independently, even though Colorado is the state that led the nation on that score three decades ago. Today, our report continues with a look at the obstacles to independent living. Laura Frank with the Rocky Mountain Investigative News Network has the story.
Link to NPR's related series: Home or Nursing Home: America's Empty Promise to Give the Elderly and Disabled a Choice
FRANK: Cliff Seigneur was a Colorado assistant Attorney General, undefeated at trial. He lived with Multiple Sclerosis for more than a decade before he could no longer work. Then last year, at age 48, he moved into a nursing home.
But now, he wants out.
SEIGNEUR: “I want to get going with my life again. And I don’t visualize my life as living in a nursing home.”
FRANK: He’s not alone. A growing number of working-age people in Colorado are winding up in nursing homes - people as young as their thirties - this is even as the overall population in nursing homes is declining. Many of them could live on their own, with some help, and the US Supreme court has said they have that right.
Every morning, Siegneur slides his 6’ 1” frame into a wheelchair and steers down to the physical therapy room at the nursing home where he lives.
(Sound of physical therapy room, chatter...) NURSE: “Cliff are you having any pain anywhere?” CLIFF: “Not really. I mean it’s all relevant.”
FRANK: He sets his dark eyes on the equipment and compels his muscles to fight back against the ravages of Multiple Sclerosis.
Siegneur has dreams of finishing a novel he started when he and his former wife owned a Douglas County horse farm with sweeping views of the Rocky Mountains. The scenery – and the serenity – were inspiring. He hasn’t been able to write, though, at the noisy nursing home
SIEGNEUR: “The atmosphere here is not one where I can personally write. Some people that maybe have a quote/unquote harder head or whatever might be able to go through the noise, et cetera, but I just can’t do it.”
FRANK: Siegneur wound up here at the North Star Community nursing home on Denver’s West side when he could no longer care for himself alone. He knew Medicaid and his monthly Social Security payments would cover nursing home costs. He didn’t know about home-based care.
SIEGNEUR: “So, I couldn’t see any better situation really.”
FRANK: He has high praise for the staff at North Star. It’s just that he wants his own place.
SIEGNEUR: “I wish I was independent because I am sort of a loaner, et cetra. And I've been independent most of my life. So it’s difficult.”
FRANK: But leaving a nursing home isn't like checking out of a hotel. Siegneur needs to find support services to replace some of the care he gets in the nursing home. Even more difficult: he needs to find a place to live, a place that’s affordable and will accommodate a wheelchair. And that’s hard to come by in Colorado.
SIEGNEUR: “There’s definitely a shortage of housing, in terms of low income housing and the availability of vouchers for people with disabilities.”
FRANK: That’s Tim Cortez. He was hired in June to lead the state's new long term care reform efforts. One of the goals is to increase the numbers of disabled people who can live independently. Studies show the amount of money it takes for one person to live in a nursing home can support nearly three people with at-home services.
But if you have a disability, finding a place to live is almost like finding a needle in a haystack.
The federal department of Housing and Urban Development says there are barely more than 1,100 housing units designated for disabled residents in all of Colorado. A check of the state-sponsored website designed to help people find accessible housing isn’t promising.
Type in a few likely scenarios: Affordable rent, wheelchair accessible entry, wide doors and grab bars in the bathroom: On this day, there are only 8 properties in all of Denver. Three have a waiting list and three are for senior citizens only.
ST. JAMES: We need many, many units. It might as well be a million.
FRANK: Paulette St. James runs a program called Project Access. It gets a small number of federal Section 8 housing vouchers, which subsidize low-income rent, and sets them aside for people with disabilities. She said no one quite knows how many more accessible and affordable housing units the state even needs.
ST. JAMES: “I mean we just have so many people that need housing assistance – whether they’re in a facility or whether they’re in the community and disabled, or have another special need. So I don’t think we can pin down a number, but that’s not to say the need isn’t broad and deep for sure. "
FRANK: Project Access is a federal program with offices in about a dozen states. This year, it had only 1,000 vouchers for the entire country. St. James’ office got 60 of them for all of Colorado.”
More and more, Cliff Seigneur is feeling like one of the lucky ones. When he first contacted the Atlantis Community center for independent living, they had just received some of the housing vouchers.
SEIGNEUR: “I feel very privileged – no doubt in my mind.”
FRANK: He began looking last June for an apartment and after months of searching, he finally found a place under construction that he could afford with his housing voucher and that was accessible with his wheelchair.
And then he almost lost it.
His housing voucher was only good for 60 days – and his apartment wasn’t finished. He got one extension, but a second was unlikely. Siegneur finally was able to sign the lease for his new apartment on the day before the extension expired.
But that was just one hurdle. There were more – like finding services that would help him get in and out of bed or go grocery shopping. The state’s Tim Cortez says that’s a huge problem for people moving out of nursing homes.
CORTEZ: “Because those resources are not in place, we don’t really have a good safety net to catch people when people do transition back into the community.”
FRANK: But Siegneur was able to find those services, too. And on Monday, he moved into his own apartment in Golden. The waiting was over.
SIEGNEUR: “The day is here. Today is the moving day – where I hit zero on my countdown.”
FRANK: Colorado is hoping to help hundreds more people like Cliff Siegneur every year to live at home instead of in an institution. The state is pinning that hope on its chances of winning a federal grant called Money Follows the Person. That would help Colorado spend Medicaid money on home health care, which studies estimate could save taxpayers here 200 million dollars on more expensive nursing home care. State officials are looking forward to February, when grant winners will be announced.
Cliff Seigneur is focused on the future, too.
SEIGNEUR: “I’m an optimistic person. So it’s almost like I’m starting again. And I think for somebody who wants to write, it’s not a bad place to start from. Not at all.”
FRANK: For now, he is looking forward to finally finishing that novel in his own apartment. Many others, however, will have to wait. Even If Colorado gets the grant it’s hoping for, services would begin in about 18 months.
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