Colorado struggles to help disabled residents create independent lives

Friday, December 10, 2010

Colorado struggles to help disabled residents create independent lives

From Laura Frank and Joe Manhoney at Rocky Mountain Investigative News Network. Jennifer LaFleur, Lauren Seaton, Andrea Sutherland and Jordan Wirfs-Brock contributed to this story. To find additional coverage on this topic from the I-News partners, read the I-News blog.

One out of every five residents in Colorado nursing homes wants out, and thousands of them could likely live on their own, an analysis of state and federal records shows.

But a shortage of places for the disabled to live outside a nursing home and regulations that critics say make it hard to qualify for home services mean many who want out continue to receive expensive nursing care.

Colorado – which was the birthplace of the independent living movement three decades ago – now is struggling to help disabled citizens receive care at home instead of a facility.

And that’s costing the state money.

“Long term care in general is costing the state more and more each year, just as more people need long term care services and the costs of care continues to increase,” said Tim Cortez, whom the state hired in June to reform long term care with the goals of serving more people and saving money.

In 1999, the U.S. Supreme Court said people who can live independently have that right. Keeping them in nursing homes is a form of segregation, the court has said, and that violates their civil rights. But Colorado doesn’t have the resources or the infrastructure to assist all the people who want out.

And while the overall nursing home population is shrinking, the number of working-age Coloradans in nursing homes is actually growing.

Many are people like Cliff Seigneur (pictured).

Seigneur was an assistant state attorney general, but his multiple sclerosis eventually made it impossible for him to work. He didn’t know about home care, and he wound up in a Denver nursing home at age 48.

“I don’t want to be brought out of this place in a body bag,” Seigneur said.

By sheer luck, he found out about the Denver-based Atlantis Community, the organization that started the independent living movement in Colorado in 1975.

When Seigneur contacted Atlantis, the organization had just received some rare housing vouchers. After six months of struggling, Seigneur was finally able to find an accessible, affordable apartment and the care services he needed to live there. He moved to his own apartment in Golden Nov. 29.

But Seigneur is the exception.

Today in Colorado, some 3,500 nursing home residents – including more than 360 in Denver – want out. But most are stuck in limbo.

Colorado taxpayers spend more than $1 billion each year on long term care for the needy. It’s the fastest growing part of the state budget, Cortez said. The largest chunk of that – more than a third – goes to people with disabilities.

Many of them could live on their own, with some assistance.

I-News analyzed Medicaid records obtained publicly for the first time by NPR, and found that thousands of Colorado nursing home residents can perform the basic tasks of daily living by themselves. Thousands more can do so with some assistance.

For example, more than 2,200 Colorado nursing home residents can bathe themselves. This was the daily living task for which most people needed help. Thousands more can dress, feed and move themselves.

Most of the care they receive now is paid for by Medicaid, the U.S. health program for the poor that is jointly funded by federal and state governments. Colorado’s total Medicaid budget is nearly $3 billion. Half comes from the state’s coffers; the other half is federal dollars.

If Colorado could spend more of that Medicaid money on home care – such as help bathing, dressing or with transportation – it could help hundreds of disabled Coloradans live independently.

And it could save millions of dollars.

A study last year found that when states spend more Medicaid dollars on home care instead of institutions, they saw their Medicaid bills drop by 8 percent. States that didn’t, saw their bills increase by about that much. That would be a $200 million difference on Colorado’s Medicaid bill.

An earlier study by the AARP Public Policy Institute showed the cost to support one person in a nursing home can support nearly three people with at-home services.
But if you’re a Coloradan with a disability, finding a home is not easy.

“There’s definitely a shortage of housing, in terms of low income housing and the availability of vouchers for people with disabilities,” Cortez said.

HUD, 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 recent check of coloradohousingsearch.com, a state-sponsored website designed to help people find accessible housing, shows only 13 accessible apartments available in all of Denver. Two of those have a waiting list; one is for senior citizens only.

Colorado is facing other challenges in its long term care programs.

In October, the Atlantis Community filed a complaint against the state, charging it is violating the civil rights of a client named Franklin Hicks. The complaint alleges that state regulations make getting out of a nursing home harder than getting in by requiring extensive documentation for home health services.

Also in October, state auditors said Colorado’s in-home support services program has been fraught with delays and poor management, and isn’t serving enough people. Many of the complaints had been previously noted, but not fixed, auditors said.

Cortez said state budget cuts and hiring freezes have stalled some progress.

“There’s certainly been vacancies in the department – in our long term care section specifically – and so, that has certainly created some backlog of things we’re looking at and wanting to do.”

But he said despite Colorado’s challenges, the state is still a leader in helping people leave institutions.

In January, state health officials are applying for a federal grant called Money Follows the Person. It would help Colorado spend Medicaid money on home health care. They’ll find out in February if Colorado wins the grant.

In the meantime, the numbers of people seeking home care services is expected to grow even more. As of October, the federal government says all nursing home residents must be asked if they want information about home- and community-based services that would enable them to live independently.

Whether Colorado gets the grant or not, the state needs to fix its long term care programs, said Shelley Hitt, Colorado’s long term care ombudsman.

“Despite that we have a strong history…that doesn’t matter much to the person who can’t access services or doesn’t have the funds,” Hitt said. “To that person, we still have a long way to go.”

Sweetness From Haiti! :-D

In Memory of Dax (Video of Matthew West's Song "One Last Christmas")

The following are Matthew West's words introducing his video "One Last Christmas":

This is the video my new Christmas song - "One Last Christmas." This song is inspired by the true story of the Locke family and their son Dax.

At just thirteen months old, little Dax was diagnosed with a rare form of Leukemia. He was given two bone marrow transplants as a part of emergency treatment; one from each of his parents. The doctors then told his parents that Dax would most likely not make it to see Christmas.

This song is about the love of a family, and the coming together of an entire community to make sure that this little boy could have one last Christmas. His dad, determined that his son would see Christmas, put up the decorations early. The neighborhood caught on, and did the same. The whole town soon followed suit. A website was built telling his story. Soon, pictures were sent from all over the world of Christmas decorations that had been put up in his honor.

Dax did lose his battle with Leukemia, but not before he got to see one last Christmas. Today, this little boy's legacy lives on, and his parents are making sure it does. They were so touched by the care they received from St. Jude's Children's Research Hospital, that they now have a desire to raise enough money to run the entire hospital for one day in honor of their son, Dax. The total cost to run St. Jude's for one day is $1.6 million dollars. Already, they have raised a quarter of a million dollars.

This Christmas, it is on my heart to join forces with the Locke family, and help them in their cause. I would like to encourage you to join us in raising money that will go to an amazing cause in St. Jude's Children's Research Hospital that cares for so many children each year.

To donate now to St. Jude's in memory of Dax please visit:
http://tiny.cc/m1mdo

To read more of Dax's story visit:
http://www.daxlocke.com/
or
http://www.matthewwest.com

Together, we can reach this goal -- and fund St. Jude's for an entire day in Dax Locke's memory!

This is why I do what I do ...Now :)

Thursday, December 2, 2010

Care at home is a civil right for people with disabilities

From Joe Shapiro at NPR:

If you ever visit Martin Luther King Jr.'s gravesite in Atlanta, turn around and look across the street at the nursing home in a red brick building. If you look through a big plate-glass window to the left of the front door, you may just see Rosa Hendrix in her wheelchair looking out at you.

Every day, she sits at the window and watches the visitors paying their respects at the civil rights leader's grave. But Hendrix, 87, is fighting her own civil rights battle: to continue her life in her own home.

There's been a quiet revolution in the way the elderly and young people with disabilities get long-term health care. A new legal right has emerged for people in the Medicaid program to get that care at home, not in a nursing home.

States, slowly, have started spending more on this "home- and community-based care." But there are barriers to change: Federal policies are contradictory, and states face record budget deficits. As a result, for many in nursing homes — or trying to avoid entering one — this means the promise to live at home remains an empty promise.

Hendrix has lived at this nursing home for five years. She says no one's ever taken her across the street to visit the grave. She'd like to go, but she'd rather just get out of the nursing home.

"I get up in the morning. Eat my breakfast. Take a shower. And make my bed and all that and sit in this chair all day," she says. "I look out the window. Laugh. At least it gives you something else to look at."

Many people believe that nursing home residents are too sick to live at home. Yet there are many people who have the same disabilities found in nursing homes, who are able to live in their own homes with assistance from family or aides.

There's a growing body of law and federal policy that states when the government pays for someone's care in a nursing home, that person should have the choice to get his care at home. That it's a civil rights issue.

NPR's Investigative Unit looked at this emerging civil right to live at home and found that although it's been established in law and federal policy, the chance to live at home remains an empty promise for many people like Hendrix. States are slow to create new programs. Washington's enforcement record is spotty. And there are often contradictory federal and state policies about how to pay for long-term care.

"People with disabilities are segregated just as African-Americans were segregated," says Sue Jamieson (pictured), of the Atlanta Legal Aid Society, who is also Hendrix's attorney.

"And this is a perfect example of segregation where we're sitting here today, because Ms. Hendrix is in a wheelchair and had a little trouble with her legs and therefore had some disabilities. She's being segregated, which is a violation of her civil rights under the Americans with Disabilities Act."

The Americans with Disabilities Act — ADA — is a 20-year-old law that bans discrimination on the basis of disability. Eleven years ago, the U.S. Supreme Court ruled in Olmstead v. L.C. that people who live in institutions like state hospitals and nursing homes but could live successfully on their own have a civil right, under the ADA, to get their care at home.

Since then, federal policy was updated in the recent health care overhaul, which says that states need to spend more money on Medicaid programs for people to receive their long-term care at home.

But federal law requires states to pay for nursing homes, while community-based care programs are optional. So as states face record budget gaps, they only slowly add, or even cut, programs designed to help elderly and disabled people live at home.

Five years ago, Rosa Hendrix fell and hurt her leg. She was sent to a nursing home for therapy and was told it would only be a short-time stay.

"[They s]aid, 'You could do therapy,' and I know therapy's not a, I don't think it's a lifetime situation," Hendrix says. "But anyway, they said ... 'when you get better then you can go home.' "

But the Social Security check she relied upon to pay the rent on that apartment was diverted to pay for her nursing home care. She lost her apartment — and suddenly had no home to go back to.

Nor did she have family who could help her.

"That's the typical story," says Alan Weil, who runs the National Academy for State Health Policy, a think tank for state officials. "Once you're in a nursing home, it's hard to get out."

All the supports you need — someone to help you get out of bed, someone to cook for you — already exist in a nursing home, he says. "You become reliant upon the services that are available that you didn't have at home: cooking, getting out of bed in the morning, getting dressed, getting what you need. Without those supports, you can't live at home. And lining up the kind of help you need to get those supports is very hard."

Hendrix is hoping Jamieson, who was also the attorney who brought the landmark Olmstead Supreme Court case, can help her move out of the nursing home.

Recently, Jamieson sat on the small bed in the room Hendrix shares with another woman. The beds are separated by a faded curtain, and the fluorescent light reflects off a dull linoleum floor. All of Hendrix's possessions are in this room: several items of clothing — the ones that haven't been stolen — and a small TV with faded color that Hendrix turns on with a remote control held together by rubber bands.

"It's so frustrating because you don't have very many disabilities," Jamieson told Hendrix. "People with a lot more serious disabilities are living in the community."

"I know that," Hendrix replied.

"And people who can't take a shower and can't dress themselves and can't do all the things you can do," Jamieson said, "are living in the community. So it makes me sad that you're stuck in here."

"Yeah, I'm sad to be," says Hendrix. "Yes, I'm stuck."

Here's what Hendrix and Jamieson are asking the state of Georgia: Help Hendrix find a subsidized apartment. Her Social Security check could help pay for it. Then take the money the state is paying for her care in the nursing home and use some of it to instead pay for an aide to come in, maybe several hours a day, to help Hendrix keep her house clean and do the grocery shopping.

State officials say they don't disagree in principle. But there's a shortage of wheelchair-accessible apartments. And there are thousands of people ahead of Hendrix on a waiting list. There are hundreds of thousands of people across the country waiting for that kind of in-home care.

In October, Georgia avoided going to trial with the U.S. Department of Justice over what the federal government said was the state’s failure to live up to the terms of the Supreme Court's 1999 Olmstead decision. So state officials agreed to spend $77 million over the next two years to set up new programs to help people with mental illness and intellectual disabilities get care in their own homes. It's expected that several hundred, or even a few thousand, will leave state hospitals as a result.

The decision does not apply directly to people, like Hendrix, who live in nursing homes. But Bill Janes, the official in the Georgia governor's office responsible for implementing the agreement, says the creation of an infrastructure of new housing, case managers and in-home health aides for people in state hospitals with mental illness and intellectual disabilities could eventually make it easier for people in nursing homes to find community-based care, too. "It's absolutely a huge step forward," he said.

An NPR analysis of unpublished data on every nursing home in America shows that nursing home residents — and how disabled they are — vary from state to state.

For example, according to this exclusive data obtained by NPR's Investigative Unit via a Freedom of Information Act request:

-- In Illinois, almost 21 percent of people in nursing homes can walk by themselves, but fewer than 5 percent can in Hawaii and South Carolina.
Also in Illinois, almost 12 percent of nursing home residents can bathe themselves without assistance, but in Iowa and South Dakota, just 1 percent can.

-- In North Dakota, 60 percent can feed themselves without assistance, but in Utah fewer than 30 percent can.

-- In Illinois, nearly 27 percent and in Oklahoma more than 25 percent of residents can use the toilet without assistance. But in South Carolina and Hawaii, fewer than 3 percent can.

-- In Georgia, where Rosa Hendrix is fighting her case, fewer than 3 percent can bathe by themselves without assistance; just under 9 percent can dress by themselves without assistance; 17 percent can get in and out of bed by themselves; just under 14 percent can use the toilet by themselves; nearly 9 percent can walk by themselves; and 40 percent can eat without assistance.

The NPR data don't show why there are such discrepancies. But other numbers offer clues. Illinois, for example, has the highest percentage of younger people in nursing homes, and many are there because they have a mental illness. Illinois is also among states that spend a large percentage of their Medicaid long-term-care dollars on nursing home care and little on what's called home- and community-based care. Two states that spend the most on home-based care — Washington and Oregon — consistently score low on the number of nursing home residents who can do things like eating and bathing without any assistance. That suggests that more independent people may be using the alternatives for community-based care.

States are supposed to create programs to help with that hard work of moving home, and to get people with mild and moderate disabilities out of nursing homes.

But it's not easy. Many state Medicaid directors get nervous about the idea that living at home is now a civil right. "Where does the state responsibility start and where does the individual responsibility start?" asks Carol Steckel, who until last month was a Medicaid director in Alabama and as the head of the National Association of State Medicaid Directors.

At a meeting of state Medicaid directors, in a hotel outside Washington, D.C., last month, Steckel noted many reasons states are reluctant to expand home-based care. How do you make sure people get good care at home? It's easy, she says, to send an inspector into a nursing home. It's harder to check on hundreds of individuals in their own homes.

And then there's the money question. It's a big problem for states facing all-time-high budget deficits.

"We've got people asking us to do 24/7 at-home care," she says, "which means that we'll be paying $500,000 for one individual. And then you have to debate as a society is that what we want to do versus taking that $500,000 and spending it on prenatal care for 10,000 women. I mean it's a societal question, it's a conundrum almost."

Only in the rarest of cases would it ever cost $500,000. Multiple studies have shown that over the long run, home-based care is cheaper: One study by the AARP Public Policy Institute found that nearly three people can get care at home for the same cost of one in a nursing home. When the Supreme Court established a civil right to home-based care, it specified that it wasn't an unlimited responsibility for states. It had to be something they could do within existing budgets.

Over the past decade, states have steadily increased spending on home-based care — but not nearly enough to meet the need. The number of people on waiting lists has more than doubled, and there are now 400,000 people across the country waiting to get into home-based care.

People like Hendrix, who is trying to get out of that nursing home in Atlanta. "I'd be all right if they'd get me out of here," she says with a rueful laugh. "Cause I just don't need to be; in fact, I don't need to be in any place like this. I need to be out on my own."

Shop For A Cure (Gwendolyn Strong Foundation)

Shopping To Cure! Support GSF This Holiday Click | Shop | Cure! It's that time of year! Holiday shopping is now in full swing! Check out some of the easy ways to help make your holiday purchases turn into SMA research dollars this season -- or what we call purchasing with purpose!!! Happy shopping and thank you for your continued support of our mission to move SMA from a deadly disease to a curable one!!! Together we can end SMA!!! ShopToEndSMA.com ->  GSF created ShopToEndSMA.com in August 2009 as a simple way for anyone to help raise much needed SMA research funding while shopping at all of their favorite online stores. This can be used year round, but the holidays are a time when online orders double, so don't forget to simply start your online purchases with ShopToEndSMA.com. There are hundreds of merchants - Macys, Gap, Old Navy, Barnes & Noble, Disney Store, Sephora, Amazon, iTunes, and hundreds more!!! And you can even book your holiday travel through ShopToEndSMA.com - airlines, car rental, and hotels! And you can even SAVE money with exclusive ShopToEndSMA.com coupons! Hope Calendar -> In just 3 years, the Hope Calendar has raised nearly $20,000 for charity. And this year's 2011 Hope Calendar is donating 100% to the Gwendolyn Strong Foundation to help end SMA! This beautiful photography calendar makes a wonderful gift. And they are only $10! Simplyorder here or sign up to help us sell them. With your help we can raise thousands for GSF. And 100% of all sales go to SMA research! Beb-e-ssentials -> In just a few months, $2,000 has been raised for SMA research by Beb-e-ssentials! And they continue to donate 15% of ALL of their darling hats, clips, and accessories and60% of every "Gwendolyn Butterfly" to help end SMA! These beautiful butterfly clips are made with hand painted threads and hand blown beads. And they are now available with pin backs and snap clips if a hair accessory isn't your thing! Simply include the code "Cure SMA" in the comment section. Divine Word Images -> Divine Word Art prints are a collection of creative black and white photos of objects, nature and architecture in the shape of letters. We are enormously honored to have been selected as the "HOPE" charity with $5 from each sale of these beautiful images going to our cause. These photographs are inspiring and make an artistic gift. Simply enter HOPE and order here. My Bunny & Me -> Between now and the end of December,MyBunnyAndMe.com will be donating 20% of ALL sales to GSF. Snuggly and personalized giant bunnies, puppies, and blankets are wonderful, unique gifts. And have your sweet little ones name embroidered right on the cuddlies ear to make this pressie extra special. You can even have the GSF logo embroidered to show your support! Just enter "GSF" in the comment section. Visit My Bunny & Me to learn more and to order. Zoolu -> Zoolu! offers an extensive line of name-brand and personalized products for both Mommy and Baby, offering customers the convenience of a big box store with the welcoming feel of a small boutique - all in one place! During the week of December 3rd through December 12th, 15% of all orders on ShopZoolu.com with the code "EndSMA" will go to GSF. Check out their super darling gifts! Be sure to check Zoolu out 12/3 to 12/12!!! Milverstead Publishing LLC ->  Common Sense, Not A Fire Exit, The Jeffrey Journey, Tracy's Story - four incredible books, four amazing authors, four opportunities to give back to SMA research!!! Learn more by visiting Milverstead Publishing's bookstore. Read Give -> Ordering magazines for friends and family? Renewing your yearly subscription? Be sure to go through Read Give and 40% is directed to GSF. Click here to learn more and place your order. Don't forget to join GSF's Facebook fan page to learn about other ways to help end SMA! Together we can end SMA! One person, one dollar at a time!

About Gwendolyn Strong Foundation (GSF) The Gwendolyn Strong Foundation (GSF) is a 501(c)(3) nonprofit public charity dedicated to ending Spinal Muscular Atrophy (SMA), the leading genetic killer of infants and young children. As witnesses to the degenerative cruelty of SMA, it is our passionate mission to accelerate research solely focused on curing this devastating disease.

Deaf Community files class action lawsuit against Cinemark

Yes, if the Deaf community wins it will affect the Cinemark theaters here in Colorado Springs.  I hope they win because they do deserve to see the movies like and with the rest of us

Wednesday, December 1, 2010

Deaf community files class action lawsuit against Cinemark theater chain for lack of closed captioned movies

From KGO-TV in Calif.:

ALAMEDA COUNTY, Calif. -- A class action lawsuit filed against a well-known movie chain is aimed at helping the deaf and hearing impaired. They want the same right to enjoy movies as those without hearing disabilities.

More than 200 million Americans went to the movies last year, according to the Motion Picture Association. Linda Drattell, one of the plaintiffs, was not one of them -- she is deaf.

"I can't enjoy a movie," says Drattell. "My daughter who sings, I can no longer hear her sing."

Drattell, 53, lost her hearing late in life. Rick Rutherford, another plaintiff, lost his hearing 11 years ago.

"I used to go to the movies on a weekly basis. It was a wonderful experience. We would all decide 'Which one should we see this week?'" says Rutherford.

The two are plaintiffs in a class action lawsuit filed against the Cinemark movie theatre chain, which owns Century Theatres. The suit charges that Cinemark discriminates against the deaf and those with hearing loss by not providing closed captioned movies.

Their attorney Kevin Knestrick says the suit comes on the heels of a 9th Circuit Court of Appeals ruling.

"The 9th Circuit essentially said that closed caption films are an auxiliary aid that theatres need to provide," says Knestrick.

The suit targets Cinemarks' Theatres in Alameda County, where Drattell and Rutherford live.

Lawyers who filed the suit say about 85 percent of first run movies are captioned when they're delivered to theatres like this one. All the theatres have to do is install the equipment.

"The cost is around $10,000 for what's called rear window captioning," says Knestrick.

The theatre mounts an LED screen in the back of the theatre that displays the captioned dialogue which is on a CD.

The moviegoer is given a small plastic screen which reflects the captions. It is as simple as that.

"We are trying to enjoy ourselves just like any other American would like to do," says Drattell. "And what would you want to happen to yourself if you should lose your hearing tomorrow?"

Cinemark's corporate office did not return ABC7's calls. 

Hear Their Cries (Livesay [Haiti] Blog)

HEAR THEIR CRIES

I read this post written by a respected friend late last night.  Please read it. Yes, it is uncomfortable to read and see. Yes, it is easier not to know of such of pain, of such suffering.

hear their cries

The World Health organization (WHO) Tuesday said that 1,648 persons have died as a result of the cholera outbreak in Haiti and that more than 72,000 others have been treated for the water borne disease which first surfaced in late October. Health organizations now predict that as many as 400,000 people will be affected in the next three months.

hear their cries

Regarding the living situation, Paul Farmer said this:  "Today, some 1.3 million Haitians live in tent camps amid often squalid conditions -- yet no one has been able to convince them to resettle. Why don't they want to leave? Because there is nothing to draw them back. Many of these displaced men and women didn't own the houses that collapsed around then; they rented them -- often under very unfavorable conditions. They were in debt to bad landlords. They had no schools or clinics. Enticing them to return home will mean providing exactly what they lacked before: housing, education, and health care."

hear their cries

Franklin Graham wrote that the suffering of the Haitian people (specifically in contrast to the prosperity of their neighbors to the north) "... Is beyond my understanding and one of the mysteries of this life."

hear their cries

I know we are not alone in longing for justice and better days for the Haitian people. The hardship they have faced in 2010 alone is astounding and horrible. 

These thoughts from this post (and the comments and discussion that followed) came to mind today.  

Hear their cries Lord. 
Hear our cries.