ADAPT's Call to Action for Home and Community in America

Common People Holding Our Government Accountable for Enforcing Our Rights

Monday, April 26, 2010

Money Follows the Person in USA Today

Nursing-home residents get aid to move out

By Phil Galewitz, Kaiser Health News

PEACHTREE CITY, Ga. — Richard Hasselbach and Deborah Kadlec met in a nursing home and dreamed of a life together outside its walls.

Their health conditions made living on their own a challenge: Hasselbach, 63, is disabled from a stroke and lost a leg to a blocked artery. Kadlec, 52, has multiple sclerosis. They both use wheelchairs and need help with basic chores such as bathing, cooking and remembering to take their medicines. Most of their relatives live in other states.

Despite those obstacles, Hasselbach and Kadlec got their own apartment and a personal care aide last summer through the help of a federally funded program run by the state. The program, known as Money Follows the Person, is the nation's most ambitious effort to move people out of nursing homes and other long-term-care facilities. It aims to help them live on their own and also save tens of millions of dollars for Medicaid, the state-federal health insurance program for the poor and disabled that pays for two-thirds of nursing home bills in the U.S.

Nationally, nursing home care averages about $75,190 per patient each year. Care in the home, through such services as meals-on-wheels and daily visits by a health aide, averages $18,000 a year, according to the AARP Public Policy Institute.

The program gives nursing home residents personal and financial help to live on their own or in small group settings, as well as payments for costs such as apartment security deposits, household furniture and alterations to make homes or cars accessible to the handicapped.

Georgia is one of 29 states and the District of Columbia participating in Money Follows the Person. Its experience shows both early successes and an illustration of the program's slow start nationwide. Georgia had hoped to move 1,312 people from nursing homes and other long-term-care facilities by 2013. Through the end of last year, though, it had moved only 221.

Combined goal: Moving 37,000 out

Congress established Money Follows the Person in 2005, and states set a combined goal of moving out more than 37,000 residents from nursing homes and other facilities by 2013. Most states, including Georgia, started their programs in 2008. Two years later, just 5,774 residents have moved nationally.

Most states are moving slowly for various reasons: problems finding affordable housing, resistance from nursing homes and stringent federal rules that limit who is eligible and what types of community settings they can move into, according to a study by Mathematica, a Princeton, N.J.-based think tank that is evaluating the program for the federal government.

For more, see

North Carolina Faces In Home Services Cuts

Proposed N.C. budget has personal impact
Posted: April 22
Updated: April 23

Born with cerebral palsy, Valerie Harper is paralyzed on her right side. Swollen limbs and severe arthritis, she says, cause her constant pain.

"I can't stand very long. I can't walk that far," Harper, 51, said Thursday.

Yet, she lives on her own, with the help of an aide who comes in two to three hours a day, five to six days a week, to assist with day-to-day tasks such as fixing meals, dressing and bathing.

"She's really like a part of me," Harper said.

But proposed budget cuts could leave Harper and thousands of others who qualify for a state-funded program called In-Home Personal Care Services without that extra help they need to live independently.

Gov. Bev Perdue's $19 billion spending plan, which includes cutting about $386 million from the Department of Health and Human Services' budget, recommends eliminating the program and creating a new one for adults with the most severe needs.

Patient advocates say the move would force thousands of people from their homes and into state facilities, where the cost of care is more expensive.

For the full story, go to:

Saturday, April 24, 2010

"It appears that in Texas there is no justice for sadists..."

January 23, 2010
Tom Perez
United States Department of Justice
Criminal Investigation Division
P.O. Box 66018
Washington D.C. 20035-6018

Dear Mr. Perez,

On behalf of Community Now! a Texas statewide advocacy group with a mission to support people with disabilities to live in their communities please accept this sincere and critical request to investigate numerous former Texas state employees who committed horrific acts of violence against residents of several state institutions for people with intellectual disabilities. Upon investigation and if warranted, we sincerely request that those individuals found guilty of criminal acts be charged by the DOJ with Hate Crimes against people with disabilities. It was recently reported in the Texas Tribune (note enclosed article) that since 2000, 75 former employees were fired because of confirmed Class 1 Abuse. This level of abuse is the most heinous and includes sexual and physical assault, murder and gross neglect. Of those 75 individuals, only two were incarcerated for their crimes.

It appears that in Texas there is no justice for sadists who commit violent crimes against our most vulnerable and at risk citizens. The Department of Aging and Disability Services (DADS), the agency who operates these facilities points to Adult Protective Services, (APS) the agency that investigates abuse and neglect at these facilities. APS points to local law enforcement and local law enforcement points to the County Prosecutors and the Prosecutors do little to nothing with these cases. And with everyone pointing fingers at everyone else, people in these facilities are abused without accountability thus sending a clear message to other facility staff that you can get away with murder.

Even with state institution reform legislation passed in the previous Texas Legislative Session (SB 643), it appears that the Ombudsman position with increased oversight authority of these facilities has not been appointed by Governor Perry and even with a network of Ombudsman, there is limited authority by the Texas Attorney General to investigate and prosecute state employees with confirmed Class 1 Abuse if the County Prosecutor is not willing to do so.

As you most likely know, Texas entered into a settlement for numerous civil rights violations investigated by the DOJ CRIPPA division. Currently, the conditions of these facilities are being monitored by the DOJ. Hopefully something will come of this monitoring to ensure the safety of those who live in these facilities.

Further, the hope is that the DOJ will ensure Olmstead is honored by closely monitoring the right of residents to leave the facility to live in the community upon their request.

Let me be clear, I am not asking for any further investigation from the DOJ regarding CRIPPA. On behalf of Community Now! we strongly request the immediate investigation and charges of Hate Crimes against those perpetrators of these despicable crimes. I was provided your name by the leadership at the Regional Office of Civil Rights. If you are not the right person to make the decision to investigate these crimes, I implore you to forward this letter to the individual charged with leading Hate Crime investigations at the DOJ with all haste. And if this is not within the authority of the DOJ, please provide me with the contact information of the appropriate person and agency to contact.

I look forward to your prompt response and immediate action to our requests. Thank you for your time and consideration.


David Wittie, President
2316 Bristol Street
Bryan, Texas 77802

Governor Rick Perry
Lt. Governor David Dewhurst
United States Senator John Cornyn
United States Senator Kay Bailey Hutchison
United States Representative Lloyd Doggett
State Senator Jane Nelson
State Senator Steve Ogden
State Senator Jeff Wentworth
State Representative Abel Herrera
State Representative Larry Phillips
State Representative Patrick Rose

State Budget in Kansas a Life and Death Struggle

Lives on the line in budget crisis, advocates for disabled say
By Scott Rothschild
April 16, 2010

Topeka — For Kansans with disabilities, the fight over the state budget is a life and death struggle.

Since 2009, 65 Kansans have died while on waiting lists for services that provide assistance in-home or in the communities, according to organizations that advocate on behalf of those with disabilities.

“They did not die in dignity,” said Shannon Jones, executive director of the Statewide Independent Living Council of Kansas. “People are languishing. Reducing their quality of life does lead to their death without dignity,” she said.

Because of plummeting tax revenues, Gov. Mark Parkinson in November ordered a 10-percent cut in Medicaid. Other social service spending was approved by legislators in February.

That has left more than 4,300 people on waiting lists for services.
Parkinson, who has proposed a temporary state sales tax increase of 1 cent per dollar, and an increase in the cigarette tax, has vowed to restore the 10 percent Medicaid cut when the wrap up session of the Legislature starts April 28.

But Parkinson has said he doubts there will be enough funding to take care of all those on the waiting list.

“I think the best we can do is restore the Medicaid rates that I previously cut,” he said recently.

For more, see

Young Alabamian Forced to Live in Nursing Facility

Some needs of Alabamians with disabilities unmet by state-funded programs
By The Associated Press
April 18, 2010, 7:31AM
Written by Michelle Rupe Eubanks -- The Times Daily in Florence

FLORENCE -- Haylee Cain doesn't belong where she lives.

At 21, she's a spirited and vivacious Crimson Tide fan, thinks wrestler John Cena is the best thing ever, and loves logging on to social networking sites such as Facebook and MySpace to catch up with friends.

But because she has cerebral palsy, Haylee lives in a nursing home.

The state of Alabama offers little or no services for people like Haylee, those with potentially debilitating physical ailments who are over the age of 21 and with an IQ of more than 70. One reason for the dearth in care, according to state and local officials, is that there is no money available to support an organization that would provide around-the-clock care or organized day programs.

"It's an issue we talk about. What happens when someone turns 21?" said Kerry Boswell, executive director for the Alabama Department of Rehabilitative Services in Montgomery.

He offers little hope the situation will change in the near future.

For more, see

Missouri Looks to Reduce In Home Services

Bill cutting in-home care moves forward in Missouri Senate

By Michael Bushnell and Rebecca Berg, State Capitol Bureau
April 20, 2010

JEFFERSON CITY - The Missouri Senate advanced a bill Monday that would reduce in-home services for those on the state's Medicaid program, over the objections of some Senators who said it would cut benefits without saving money.

Legislative staff estimated the bill, as written, would save the state $11 million in 2011. Sen. Tom Dempsey, R-St. Charles, who sponsored the bill, said this would be achieved in part by reducing reimbursements to those on Medicaid and allowing the state to privatize its assessments of who is eligible for in-home health care.

Currently, the state's health department is responsible for all assessments.
As of September, 42,827 Missourians on Medicaid received some kind of in-home health care treatment. Dempsey said reducing services is just one step towards balancing the state's budget, a process he said Gov. Jay Nixon made more painful.

For more, see

Thursday, April 22, 2010

Money Follows the Person in USA Today

Nursing-home residents get aid to move out

By Phil Galewitz, Kaiser Health News

PEACHTREE CITY, Ga. — Richard Hasselbach and Deborah Kadlec met in a nursing home and dreamed of a life together outside its walls.

Their health conditions made living on their own a challenge: Hasselbach, 63, is disabled from a stroke and lost a leg to a blocked artery. Kadlec, 52, has multiple sclerosis. They both use wheelchairs and need help with basic chores such as bathing, cooking and remembering to take their medicines. Most of their relatives live in other states.

Despite those obstacles, Hasselbach and Kadlec got their own apartment and a personal care aide last summer through the help of a federally funded program run by the state. The program, known as Money Follows the Person, is the nation's most ambitious effort to move people out of nursing homes and other long-term-care facilities. It aims to help them live on their own and also save tens of millions of dollars for Medicaid, the state-federal health insurance program for the poor and disabled that pays for two-thirds of nursing home bills in the U.S.

For the rest of this excellent article, plus statistical resources, see

Saturday, April 17, 2010

Excellent Write Up of Community First Choice Option's Value


Thursday, April 15, 2010
Hope for the long term
By Christine Vestal, Staff Writer

A casual observer of the health care debate might think the historic new federal law does little to help older Americans. In fact, emotional talk of "death panels" likely led more than a few people to expect bad news for end-of-life care.

It’s true that the new law promises to pay only a tiny share of states’ biggest and fastest growing health care bill – long-term care for the elderly and other adults with disabilities. Still, its attention to the issue may end up paying much bigger dividends in the future.

The law, known as the Patient Protection and Affordable Care Act, includes the first-ever national long-term care insurance plan – called Community Living Assistance Services and Supports, or CLASS – a federally administered program financed through payroll deductions. If a significant number of people sign up for the voluntary program – a heavily debated issue – individual long-term care benefits could defray a portion of states’ costs.

But the real gift the new law presents states is a detailed roadmap to the most successful ways to cut costs and improve services for the elderly. By offering incentive payments of 2 to 6 percent of costs, the federal government is encouraging states to adopt and expand successful programs pioneered by a handful of states that give elders more options for their care at much lower expense.

Health reform’s incentive funding for long-term care would flow through Medicaid – the federal-state health insurance plan for the needy – in the form of a slightly increased federal share for certain programs. And although the amounts are small, the power of the bully pulpit could accelerate state long-term care reforms, yielding billions in savings and substantial improvements in the care of our elders.

It is well known that nearly all seniors and adults with disabilities want to remain in their homes as long as possible, and it’s vastly cheaper for states to provide the help – meals, bathing and dressing, and other home services – that allows them to do so rather than resort to institutionalization. Yet, the majority of those who need long-term care are isolated in facilities estimated to cost at least three times as much as comparable home-based care.

For decades, states have experimented with programs to help elders age at home, saving millions that otherwise would be spent on costly nursing home stays. But the millions saved in a few states has barely made a dent in the behemoth national long-term care bill – $147 billion in 2009 and projected to reach $207 billion by 2020 and $346 billion by 2040.

Here’s the problem: Medicaid – which pays nearly 50 percent of all nursing home bills in the country and 40 percent of all long-term care -- is biased in favor of institutional care. When seniors qualify financially and are deemed to need care, Medicaid funding for a nursing home bed is guaranteed. But for those who want to remain at home, funding is only a possibility and a national shortage of home health providers often means long delays.

Meanwhile, waiting for help can be out of the question when a loved one has fallen and broken a hip or suffered a serious stroke. So nursing home care, an entitlement under Medicaid, becomes the fallback, while so-called home and community-based care remains an optional program in most states.

Still, states have made progress – some more than others.

In 2006, Oregon, New Mexico, Washington and Alaska spent more than 50 percent of their Medicaid long-term care dollars for the elderly and adults with disabilities on home and community care. Other states, including Iowa, Massachusetts, Minnesota, New Jersey, Ohio and Vermont are moving in the same direction.

In contrast, Tennessee, Indiana, Utah and North Dakota spent 5 percent or less on non-institutional care. As a national average, state spending on home and community-based care accounted for 41 percent or nearly $45 billion of total Medicaid long-term care spending in 2006, up from 13 percent in 1990.

Incentives in the new health care reform law aim to even out states’ progress in balancing long-term care options between nursing facilities and home and community care by setting goals of at least 50 percent of state spending on home care by 2015 for states that already spend 25 percent or more, and 25 percent by 2015 for states that spend less than 25 percent on non-institutional options.

Does the new federal law go far enough? Many policy experts say ”No.” But most agree that the final product of years of health reform debate went further than they expected toward recognizing the need to change our nation’s long-term care system.

After all, the historic law’s primary aim is to provide coverage for the nation’s masses of uninsured – and seniors aren’t among them. Those aged 65 and older are covered by Medicare, the federal insurance plan for the elderly. And those who require more than a brief stay in a nursing home can tap into Medicaid – once their own resources are exhausted.

But in addition to covering the uninsured, Congress and the Obama administration wanted to reduce the nation’s spiraling health care costs and ease the growing Medicaid burden on states.

Long-term care represents more than 30 percent of states' Medicaid bills, which occupy more than 20 percent of overall state budgets. Medicaid costs are growing faster than any other state expense and long-term care costs are growing even faster.

That’s partly because Americans are living longer. By 2020, the number of people aged 85 years and older -- those most likely to need long-term care -- will increase by more than 40 percent, according to U.S. Census Bureau estimates. By 2040, the number of these very old people will increase more than 250 percent, from 4.3 million in 2000 to 15.4 million.

Even without those demographic pressures, states’ long-term care costs are daunting. The elderly and disabled represent about 25 percent of the total Medicaid population, but they account for more than 65 percent of the spending, according to the most recent federal data available.

States have every incentive to find ways to reduce the costs of long-term care and the new health reform law just gave them one more. Over the decades, federal money -- even in small amounts – has been an effective catalyst for state innovation. These difficult fiscal times may provide one more example.

--Lauren Lambert, Pew Center on the States researcher, contributed to this article.
Contact Christine Vestal at

New Hampshire Editorializes on Budget Cuts and Disability Waiting List

From the Nashua Telegraph

Let’s not reinstate disability waiting list

There was cause for celebration only a few short months ago, when the state’s waiting list for people who qualify for services for the developmentally disabled was finally eliminated. But the joy was short-lived and replaced by trepidation.

Last month, reinstating the waiting list was one of the budget measures the House Finance Committee unanimously recommended to help balance the budget. The proposal called for $47 million in cuts, the first phase of $132 million in reductions that must be made to balance the state’s books. The proposal was later tabled pending further study.

Any cut the state makes will be painful, but restoring the disability waiting list would also be expensive and illegal. The Legislature should not look to the disabled for help balancing the budget. If it once again does, we strongly encourage advocates for the developmentally disabled to sue, since that’s often the only way to get the state to act.

For decades, hundreds of people in need of services or placement in a community setting, rather than in an institution, languished on the list for months or even years. At one point, there were more than 400 people in line. The state, in part to respond to lawsuits, whittled that list down considerably between 1999 and 2004. Then the list began growing again.

In 2006, lawmakers passed a bill that required that no one qualified to receive services wait longer than 90 days to receive them. The new budget-balancing proposal would have repealed that requirement.

Caring for someone with a developmental disability or an acquired brain injury can impose an unbearable burden on families that can’t get the assistance they are entitled to by law.

Parents are forced to give up jobs to care for adult children, and the disabled with jobs may lose them. While the disabled wait for help, their skills regress and the quality of their life erodes.

Keeping people on the waiting list would likely be found illegal under the Americans with Disabilities Act, Medicaid rules or even under provisions in the recently adopted health care reform act.

The U.S. Supreme Court ruled long ago that the developmentally disabled must be cared for in their communities in the least restrictive setting appropriate for their condition. When a waiting list that exceeds Medicaid’s standard 90-day period exists, that right is abridged.
By definition, a person who qualifies for services has the right, if those services aren’t being provided, to be placed in a group home or an intermediate care facility. The cost for each placement typically comes to between $150,000 and $200,000 per year.

The Supreme Court did say that the resources available to a state to care for the disabled can be a factor in determining whether a violation exists. But New Hampshire’s current budget crisis is not the yardstick that court or any other would use in deciding that question. What counts is the effort the state makes, given its means.

New Hampshire ranks 34th nationally when its per capita spending on aid to the disabled is measured against per capita income. That’s down from 10th in 1999. The state spent an average of $43,594 per person on such aid in 2008. That’s the lowest sum in New England and just a little over half what the state of Maine spends.

People on the waiting list want to live in their community, and it’s cheaper to help them do so. It’s also the law. The next time lawmakers take scissors to the state budget, they should keep them an arm’s length away from funding for the services to the disabled.

– Concord Monitor

Memphis Files HHS OCR Complaints

From ADAPTer Randy Alexander of Memphis, Tennessee:

The Memphis Center for Independent Living has assisted three individuals, stuck in nursing homes to file OCR complaints, with three more coming by the end of this week.

Surprisingly, OCR in Atlanta has already contacted us, for more info on the first three complaints.

Folks, HHS OCR needs to hear from residents of nursing facilities as to whether they are being moved out into the community fast enough. If not, they should file a complaint ASAP.