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

Common People Holding Our Government Accountable for Enforcing Our Rights

Friday, February 26, 2010

DOF Update: Denver ADAPT

For the past two weeks Denver ADAPT has been taking shifts at the Colorado Capitol building, in an effort work on the budget cuts at the state level that are starting to take a toll on the Atlantis Community and other home healthcare agencies. We’ve visited every member of the Joint Budget and House and Senate Appropriations Committee’s and marched down to Gov. Bill Ritter’s office to demand that they work with ADAPT to end the institutional bias.

While HCBS has already taken a 4.5% (with another 1% coming soon, and a threatened 20% cut on nursing rates,) the nursing homes continue to get their raises. Denver ADAPT has been there everyday to tell the state lawmakers that enough is enough and that if the budget is going to ever be balanced in a way that doesn’t cost human lives then you’re going to have to cut some of the funding from institutions; we’ve even gone as far as asking (oh my,) for a late bill in this session that calls for an end to the institutional bias.

And some lawmakers are listening.

Yesterday Rep. Riesberg told us that not only would he make sure that our literature would end up on all of his 100 of his colleagues desks, he also told us he would be going to Health Care Policy and Finance to see why they were cutting the vital nursing visits that people with disabilities need so badly.

We’ve also accomplished meetings with 5 other Representatives. With the midterm elections coming up many of them flinched when we asked for a late bill to end the institutional bias by taking away compulsory raises for nursing homes, but none of them have told us flat out “no.” But the hard work continues, as we speak there are two more ADAPTer’s at the Capitol who are advocating for our late bill.

Tomorrow we start round two with the JBC, Appropriations and the Governor; ADAPT doesn’t plan on resting until the institutions have to play by the same rules as the rest of us.

Letter from California: Magdalin Marinos

The following letter was sent and will be resend to CA. District Senators as an advocacy effort to reach the CA. Congress that is being forced by Arnold Schwarzenegger to make drastic cuts to the IHSS programs in an attempt to eliminate this program, as to fix the CA. budget crisis.


Jan. 20, 2010
Magdalin Marinos
Downey, CA 90241

Arnold Schwarzenegger is planning to make inhumane, and destructive cuts to the IHSS program that will bring about suffering, harm, hardship, destruction and death to lives of thousands of people. The apathy of the Schwarzenegger administration towards people of need is inconceivable, reprehensible, atrocious, and downright despicable. His administration is a violation of the human and civil rights of people with disabilities, the sick, the elderly and the indigent who are in need of services to meet their daily survival needs in a dignified and humane manner which allows them to exercise their freedoms of choice, life, and self determination.

The changes that have been made up to this point to the IHSS program and those that are currently being proposed for the IHSS program are creating for IHSS consumers extreme suffering, harm and hardship. The IHSS program was created to provide a certain level of home care for those in need. Many individuals have used this program as a supplement to other care service resources, since for many people the need is greater than the program actually meets, as to remain semi-independent and out of nursing homes. Due to the program’s financial shortcomings, the IHSS program consumers, who have been receiving services in order to have dependable, trained caregivers, have had some very distressful experiences with the program’s policies, even before the current negative changes to the program were proposed and passed. For example, finding skilled, responsible capable workers who could be long-term caregivers has always be a major problem for IHSS consumers due to the IHSS low wage rate and low service hours. The IHSS program has needed to be upgraded in the areas of provision of service hours of care (especially for the more severely disabled) and higher wages, as to ascertain a better level of care by qualified caregivers. Instead, the IHSS program changes are creating even more chaotic and distressful problems for consumers. These changes can and will completely jeopardize the well being, quality of care and even life survival of consumers.

In 2009, the changes made to IHSS policy including the length of time it can take for a consumer to hire a provider, based on the new policy rules for IHSS caregiver registration that were passed, has created an impossible situation to overcome without the experience of hardship and harm for people who have severe disabilities or, severe medical issues. Individuals whose physical functioning is limited and cannot live independently, “cannot” possibly wait for a lengthy and expensive enrollment process to be completed (a process which also must be essentially an agreeable arrangement with the potential worker) for hire and payment demands for the caregivers to be procured, so that consumers may have their required need for immediate assistance, being now prolonged by the system, met correctly. This delay of essential services is an inevitable cause of negative effects impacting the well being, quality of care, stability of service provision, safety, and medical status of the consumers.

The Schwarzenegger administration is currently proposing more severe cuts, to complete elimination of the IHSS program. Once more, he is showing complete indifference and apathy of what will happen to those who end up without caregivers. Further, the inhumane administration of Schwarzenegger wants to lower caregiver wages to minimum wage. This action will cause the complete elimination of qualified caregivers, who will be willing to work with such low wages and are needed to do the extensive provision of skilled care, medical and non-medical, that is required by many consumer cases. Much care at home is comparable to CNA work done in nursing homes, and in most instances it is that skilled type of provision of care that is required at home by consumers. CNAs are paid up to $11-$12 an hour while Mr. Schwarzenegger wants home caregivers/aides (CNAs or, not) who are needed to provide equal skilled assistance to medically afflicted individuals to get paid minimum wage. It is truly a complete disregard and degradation, by the Schwarzenegger administration, of the rights of all individuals participating in the IHSS program, caregivers and consumers.

Ultimately, IHSS consumers are on the program due to financial need in covering the high expense of home care. People cannot pay out-of-pocket for assistance, otherwise they would not be on IHSS, and may not have available caregivers or, family members to assist them. Should people be forced into nursing homes, even though they can fully participate in the community and live at home because of the reprehensible actions of Schwarzenegger’s administration, who is choosing to discriminate towards the indigent, disabled, and elderly individuals of this society, instead of doing what is right? It is utter “discrimination” when a government administration chooses a specific class of individuals to decimate by eliminating essential provisions of basic life assistance, leading to the degradation of their freedoms and rights to life, and choice for essential care, while refusing funding changes in other areas where people will not be impacted as atrociously.

These potential IHSS cuts are issues of crucial significance for the individuals in need as they can ultimately determine their lives. These issues however, seem to be insignificant and oblivious factors to those who ignorantly want to pass and choose to pass faulty service policies without any awareness, empathy, compassion, sensitivity and understanding of the needs of those who depend on the services of programs, such as IHSS, and how we will be individually affected.

Personally, I am an individual with a severe disability, needing full time care, and I have been receiving IHSS services as to supplement my resources and remain at home and out of a nursing home. I am a full participant in this society and an educated individual, having rights as anyone else, and wanting to live with dignity and choice to quality of care in order that I may have quality of life, as all people desire and strive for in our world. IHSS has been one resource that I have used in order to pay for some of the care that I need. Any loss of my available care service resources, paid and non-paid (immediate family members), would be a detriment to my ability to have stable home care, as I would not be able to cover the expense of full time care. Ultimately, without essential income and resources it is not possible to pay for the level and type of care that I require. Further, I personally know how difficult it is to search, interview, find, secure, hire, train, get-along with, and keep caregivers working long-term, while being on IHSS. It is a constant stressor and frustration, and since caregiver turn-over rate is very high, due to low wages and minimal service hours, finding new people is a constantly stressful, laborious, problematic, hard bearing and draining situation to deal with. If this administration destroys this program then, many people, including me, will suffer. Ultimately IHSS needs to be upgraded not downgraded, as it is being proposed, if it is going to be a program that will allow for quality of care to be a possibility for people, like me, who are in need of such services.

It is truly a shame, that people who have to deal with distressful medical conditions, and financial problems and depend on government assistance, need to go through so much more unnecessary stress, chaos, suffering, harm and problems due to the faulty and inadequate policy making being made by such inhumane, ignorant, biased, and discriminatory administration of Gov Schwarzeneger. I am sorry, that as the people's Governor, people's lives seem so insignificant to him, in comparison to meeting budget debts. His response, to our human concerns and needs, is truly inhumane, and discriminatory towards all who strive to have some quality of care and life in order to make it from day to day.

Please consider the depth of this issue and support our rights to quality of care and life as full citizens of this country, by rejecting any additional harmful cuts to the IHSS program. It is my hope that this matter can be resolved and corrected without a legal class action by all people who are affected and joining together to make this matter right according to our human and civil rights in this country.

Magdalin Marinos, MSW

IHSS Threatened in California

Clients fear loss of in-home services

By Sam Womack/Staff Writer Posted: Friday, February 19, 2010

When taxes are paid, there’s a certain expectation that those hard-earned dollars will go to help children, the elderly, the disabled — the most vulnerable and helpless in our society.
And yet, in an effort to close the state’s estimated $20 billion deficit, one proposal is to take away Andrea Hylton’s lifeline.

Hylton is a 64-year-old Santa Maria resident with a multitude of debilitating mental and physical issues.

She is also one of approximately 427,000 California residents with disabilities who could lose their state-funded caregiver if the state Legislature agrees with the governor’s recommendation of cutting $1.8 billion from the program, according to a Santa Barbara County report.

Approximately three years ago, Hylton hired Susan Oeland through the state’s In-Home Support Services (IHSS), a program that identifies how much assistance a person needs, and then provides the money to hire a helper, either a family member, friend or a professional provider.

The services are available to low-income people who are over age 65, blind, or with disabilities, to enable them to remain safely in their home as opposed to committing them to more expensive options, such as institutions or nursing homes.

It is a cost-saving safety net and welfare program that has been around for 35 years.
Approximately 47 hours a month, Oeland helps Hylton with housework, laundry, cooking, shopping, bathing, dressing and making it to doctor’s appointments.

“Without (IHSS) I would be helpless, completely helpless,” Hylton said this week.

In Santa Barbara County, there are a total of 3,000 IHSS clients who require anywhere from a few hours a week to round-the-clock assistance in their homes.

Gov. Arnold Schwarzenegger’s proposed budget includes limiting services to IHSS recipients to those with a functional index score of four or less — one being able to perform a certain task and five being unable even with assistance determined by a social worker.

The index scores do not take into account whether the person resides alone, has cognitive disorders, such as Alzheimer’s disease or other forms of dementia, or needs protective supervision or paramedical services, according to Santa Barbara County analysis.

Approximately 2,700 people are at risk of losing their IHSS assistance in Santa Barbara County, and “a vast majority of these people are going to be left to languish or linger alone, without any support or assistance,” said Kathy Gallagher, director of the county Department of Social Services.

“I’m just scared of what might happen,” Hylton said.

The 30-year Santa Maria resident has no family, no social network and no car, and survives on a fixed income.

A few weeks ago, Hylton took a tumble in her apartment at about 3 a.m. and broke her knee cap. She crawled to the phone and called a friend, who didn’t call back until four hours later. She waited on the friend to call 9-1-1, but did not explain why.

“I was scared. I was in pain. There was no one to help,” she said of the upsetting experience.
Her recent accident is similar to what the county’s analysis predicts as a result of the program cuts.

“There will be a portion of recipients that will be at high risk of self-neglect as they cannot physically care for themselves or meet their basic medicinal needs. This could result in serious injury, institutionalization and even accidental death,” it stated.

Like many who receive IHSS assistance, Hylton doesn’t have the means to afford a nursing home, but even if she did, there are not enough beds in California.

An estimated 1,300 IHSS clients in Santa Barbara County could probably qualify for a nursing home bed, but there aren’t even close to that many on the Central Coast, Gallagher said.

In the state, there are only about 20,000 licensed nursing home beds, and a study from the UCLA Center for Health Research estimates that more than 200,000 clients would seek beds if the IHSS program was cut.

Ironically, in the 1980s, the IHSS program was created to reduce the high cost of nursing-home care and offer seniors a better quality of life in their own home, which is why nursing homes fell out of favor.

Hylton said she would avoid a nursing home or institutionalization for a long as possible because her constant companion “Peanuts,” her pudgy Jack Russell terrier, could not come along.
But she may never need to make that tough choice, because her IHSS provider, Oeland, has become more than a part-time helper; she is Hylton’s friend.

“She’s like a second mom to me, and I’m like her daughter,” Oeland said.

“I’ll never let her be alone. I’ll continue to take care of her if the program is eliminated,” she vowed, even though as an IHSS worker, she faces a wage decrease from $11.50 to $8 an hour in the proposed state budget.

IHSS assistance is just one human-services program on the chopping block in the governor’s proposed 2010-11 budget.

Also included are CalWORKS, Healthy Families, Medi-Cal, Supplementary Security Income (SSI) and the California Food Assistance Program.

The proposed budget also stipulates that if the federal government doesn’t come up with an additional $7 billion for the state, then IHSS assistance, along with CalWORKs and Healthy Families, will be completely wiped out.

Posted in Govt-and-politics on Friday, February 19, 2010

Tuesday, February 23, 2010

JFAAN Releases Agenda; Contact Steny Hoyer NOW!


Today, the Justice for All Action Network (JFAAN) is releasing a comprehensive agenda that calls for eliminating the institutional bias by passing the Community Choice Act (S683/HR1670)! JFAAN's cohesive policy agenda has three major themes: 1) safeguard human rights and respect human dignity, 2) enhance self-determination, and 3) make technology work for everyone.

JFAAN is a coalition led by 13 national organizations run by people with disabilities with identifiable grassroots constituencies around the country. The steering committee of JFAAN includes ADAPT, the American Association of People with Disabilities, the American Council of the Blind, the Autistic Self Advocacy Network, the Hearing Loss Association of America, Little People of America, the National Association of the Deaf, the National Coalition of Mental Health Consumer Survivor Organizations, the National Council on Independent Living, the National
Federation of the Blind, Not Dead Yet, Self Advocates Becoming Empowered, and the United Spinal Association.

At 12:30 pm, Senator Tom Harkin (D-IA), House Majority Leader Steny Hoyer (MD-5) and Representative Cathy McMorris Rodgers (WA-5) will join leaders from JFAAN at a press conference in the Capitol Visitors Center where the group will outline their legislative agenda of the disability community for the 2010 Congressional Session. Senator Harkin is the
Senate sponsor of the Community Choice Act in the Senate, and Representative McMorris Rodgers is a cosponsor of the CCA in the House of Representatives, but House Majority Leader Steny Hoyer has not yet signed on to CCA.


Congressman Steny Hoyer helped to lead the passage of the ADA, and he has previously co-sponsored MiCASSA, but he is not yet a co-sponsor of the Community Choice Act (CCA). ADA! He now needs to lead Congress to eliminate the institutional bias and pass the Community Choice Act. Contact Representative Steny Hoyer and ask that he end the institutional bias and become a co-sponsor of the Community Choice Act.

The ADAPT Community has set up a national alert so you can send his office a fax or email right now!

Go to: and take action!


Bruce Darling


Monday, February 22, 2010

President Obama Tells Denver ADAPT: I Support Olmstead

On Thursday, February 18, President Obama went to Denver to highlight job creation with Colorado's Senator Bennet. Four ADAPTers went to the event after and the indomitable Dawn Russell cornered the President and not only handed him the letter copied below, she made him read it to her and after reading it said he supports enforcing Olmstead. Another victory for ADAPT. The video above shows the President shaking his hands in a crowd and being snagged by Dawn Russell, then having the aforementioned conversation. ***The video is NOT captioned.

Joey, one of Denver ADAPT's new members, took the video and he also caught the attention of the President. Denver ADAPT also gave our letter to Senator Bennet and the Governor so they too could share it with the President and work with ADAPT to End the Institutional Bias. Then when President Obama and his entourage left the Filmore for their next stop members wearing the same level orange ADAPT gear worn inside waived goodbye.

While all of this was happening Denver ADAPT members were at the Capitol working for a late bill to end the automatic raises for nursing homes. There will be lots to blog about!

Free Our People! This report is compiled from writing by Dawn, Dale Reid and Bob Kafka.

The letter that Dawn handed the President reads as follows:

Dear President Obama:

In this “Year of Community Living” and the 20th Anniversary of the ADA we would appreciate you doing the following:

Direct Attorney General Holder and Secretary Sebelius to aggressively enforce the Supreme Court’s 1999 Olmstead Decision at the state level and END THE INSTITUTIONAL BIAS in Medicaid long term care.

Thank you for defending our freedom and enforcing the civil rights that people with disabilities continue to strive for.

For an Institution Free America

The ADAPT Community

Sunday, February 21, 2010

Virginia, Nevada, Louisiana, Arkansas Continue Medicaid Cut Struggles

Another set of massive budget cuts by the House

Another set of massive budget cuts were proposed today, this time by the House of Delegates to close Virginia’s $4 billion shortfall.

And a lot of it will sound familiar.

The reason: the House plan is largely in line with the cuts proposed by Governor Bob McDonnell.

The major differences are:

The house plan rejects McDonnell’s suggestion of 10 furlough days over two years for most state workers, it spares further cuts to higher ed, it kills a proposed out-of-pocket employee retirement contribution, and it provides a 2011 Christmas bonus.

For more, see

Nevada in Budget Squeeze

Nevada's $887 million deficit is puny compared with California's $20 billion hole.

But in a state that operates one of the leanest budgets in the nation, that amounts to a 22% shortfall, a gap that has some worried that the state might fall further behind in such areas as education and health care, where it already lags behind other states. Others sense an opening to chart a new course in small government.

"We are working on solutions to turn this recession into an opportunity to reinvent our state's government," Republican Gov. Jim Gibbons said in an emergency State of the State address this month. "We may never have an opportunity like this again," he said. Mr. Gibbons faces a tough primary battle this year and has had low approval ratings.

For more, see

La. budget cuts outlined

Mid-article: Many agencies still will have to make do with less money in the upcoming budget year.

In health care:

• The more than $6 billion Medicaid program would get $350 million less than what was initially authorized in the current fiscal year.

The reduction translates into an average 3 percent cut in the reimbursement that doctors, hospitals and other Medicaid providers receive for treating the poor. The practical effect is that Medicaid program enrollees may have a tougher time finding someone to care for them.

State Health Secretary Alan Levine said he has not decided yet how to distribute the rate cuts. Some providers may get a larger percentage cut than others.

• In mental health services, the Jindal administration replaced only $30.9 million of a $42.9 million reduction in federal funding.

Levine said the administration wants to save money by caring for more of the mentally ill in the community rather than in institutions. He said institutions are more expensive than contracting for private beds in patients’ communities.

The state operates mental health institutions in Pineville, Jackson and Mandeville.

Levine characterized the shift as a reform rather than a reduction — a shift away from locking people in a mental hospital when they may not need that level of treatment.

However, the closure of beds in state institutions likely will mean a loss of jobs if workers cannot find employment with a private company or simply cannot relocate.

Levine said he is trying to prevent the reduction in federal money from causing a reduction in mental health services.

“Let’s catch our breath. Let’s try to make structural changes,” he said.

For more, see:

Arkansas lawmakers fret over Medicaid budget cuts

Arkansas lawmakers on Tuesday told the state's Human Services chief they want more influence over how the state will reduce the cost of Medicaid programs by $400 million.

Arkansas Department of Human Services Director John Selig told lawmakers the department plans to keep next year's budget for the program at the same level as this year. But Selig says that means cutting $400 million in the program because of increasing costs and more clients.

For more, see:

Washington Post's Broder on the Governors' Fiscal Black Hole

From David Broder at the Washington Post:

As the nation's governors gather in Washington for their annual winter meeting, the states they lead are facing what one knowledgeable authority calls "a lost decade" of stagnant or declining revenue and budget crises.

Ray Scheppach, the man who used that phrase, has the credentials to call the situation "almost unprecedented." A veteran federal budgeteer, he has served as executive director of the National Governors Association for the past 27 years. In an interview just before the opening of this year's meeting, he told me that the most recent survey he'd conducted shows that "the states have not bottomed out yet; they're continuing to deteriorate. This year will probably be the worst for state budgets, and with the jobless recovery we're having, we're looking at a lost decade" before anything like normality returns.

For more, see:

How Much Did Medicaid Enrollment Grow in Your State Last Year?

USA Today created a cool tool that lists growth rates in Medicaid. See to locate your state and its percentage. Maryland was the big "loser" with its Medicaid enrollment rate growing more than 20%!

Medicaid State Budget Cuts in the New York Times

February 19, 2010

States Consider Medicaid Cuts as Use Grows


WASHINGTON — Facing relentless fiscal pressure and exploding demand for government health care, virtually every state is making or considering substantial cuts in Medicaid, even as Democrats push to add 15 million people to the rolls.

Because they are temporarily barred from reducing eligibility, states have been left to cut “optional benefits,” like dental and vision care, and reduce payments to doctors and other health care providers.

In some states, governors are trying to avoid the deepest cuts by pushing for increases in tobacco taxes or new levies on hospitals and doctors, but many of those proposals are running into election-year trouble in conservative legislatures.

In Nevada, which faces an $881 million budget gap, Gov. Jim Gibbons, a Republican, proposed this month to end Medicaid coverage of adult day care, eyeglasses, hearing aids and dentures, and, for a savings of $829,304, to reduce the number of diapers provided monthly to incontinent adults (to 186 from 300).

“We are down to the ugly list of options,” the state’s director of health and human services, Mike Willden, told a legislative committee last week.

The Medicaid program already pays doctors and hospitals at levels well below those of Medicare and private insurance, and often below actual costs. Large numbers of doctors, therefore, do not accept Medicaid patients, and cuts may further discourage participation in the program, which primarily serves low-income children, disabled adults and nursing home residents.

In Kansas, a 10 percent cut in provider payments that took effect on Jan. 1 has prompted such an outcry that Gov. Mark Parkinson, who imposed it, now wants to restore the money by raising tobacco and sales taxes.

Even if Mr. Parkinson, a Democrat, overcomes resistance in his Republican-controlled Legislature, it will be too late for Dr. C. Joseph Beck, a Wichita ophthalmologist who informed his Medicaid patients last month that he could no longer afford to treat them.

Dr. Beck said that over eight months last year, his practice wrote off $36,000 in losses from treating 17 Medicaid patients. The state-imposed payment cut, he said, was “the final straw.”
“I’m out, I’m done,” Dr. Beck said in a telephone interview. “I didn’t want to. I want to take care of people. But I also have three children and many employees to take care of.”

Concerns about health care costs are likely to dominate the winter meeting of the National Governors Association, which begins Saturday in Washington.

In advance of the gathering, administration officials have urged governors to endorse President Obama’s health care proposals, or at least to avoid criticizing them. The Democratic plan, which is stalled in Congress, would vastly expand eligibility for Medicaid as one means of reducing the number of uninsured.

But many governors said they were more concerned about the growth of existing health programs. The recession and high unemployment have driven up enrollment in Medicaid while depleting state revenues that help pay for it.

A survey released Thursday by the Kaiser Family Foundation found a record one-year increase in Medicaid enrollment of 3.3 million from June 2008 to June 2009, a period when the unemployment rate rose by 4 percentage points. Total enrollment jumped 7.5 percent, to 46.9 million, and 13 states had double-digit increases.

Because Medicaid enrollment often lags behind unemployment, this year’s increase could prove even greater.

The National Association of State Medicaid Directors estimates that state budget shortfalls in the coming fiscal year, which begins in July in most states, will total $140 billion. Because Medicaid is one of the largest expenditures in every state budget, and one of the fastest-growing, it makes an unavoidable target.

“For most states, the fiscal situation is still dire, and the Medicaid cuts are significant,” said Scott D. Pattison, executive director of the National Association of State Budget Officers.

Governors and legislators have managed to defer the deepest cuts because the federal stimulus package provided $87 billion to states in Medicaid relief. The cost of Medicaid is shared by the federal and state governments, with states setting eligibility, benefit and reimbursement levels within broad federal guidelines, and Washington covering the majority of the expense.

But the stimulus assistance is due to expire at the end of December, in the middle of many states’ fiscal years, leaving budget officials to peer over a precipice. Congress and the White House are considering extending the enhanced payments for six more months, at a cost of about $25 billion.

The House has passed such a measure and Mr. Obama included it in his budget this month, but the Senate has not acted.

The extension would not come close to filling the Medicaid gap in many states. In Georgia, for instance, Gov. Sonny Perdue assumed in his budget proposal that the additional federal money would be provided, but that the state would still face a Medicaid imbalance of $608 million, said Dr. Rhonda M. Medows, the commissioner of community health.

Mr. Perdue, a Republican, decided it would be unwise to cut optional benefits because that might drive Medicaid patients into expensive emergency rooms. He proposed instead to levy a 1.6 percent tax on hospital and managed care revenues and to cut payments to many providers by nearly 2 percent.

Without the tax increases, which face opposition in the General Assembly, the state will have to cut provider payments by 16.5 percent, Dr. Medows said.

“I won’t have any primary care doctors left, much less specialists,” she said. “Certainly down here nobody likes to talk about taxes, but sometimes you have to bite the bullet and do what’s right for a whole lot of people.”

In the Kaiser survey, almost every state reported that Medicaid enrollment for the current fiscal year was exceeding expectations, making midyear budget cuts necessary.

The options are limited by several realities. To qualify for Medicaid dollars provided in the stimulus package, states agreed not to tighten eligibility for low-income people. And any time a state cuts spending on Medicaid, it loses at least that much in federal matching money.

Despite the ban on restricting eligibility, hard-hit states like California and Arizona are considering proposals by their governors that would remove hundreds of thousands from the rolls once the federal financing ends. Gov. Jan Brewer of Arizona, a Republican, has called for eliminating Medicaid coverage for 310,000 childless adults and ending the Children’s Health Insurance Program to help close a two-year budget gap of about $4.5 billion.

Gov. Phil Bredesen of Tennessee, a Democrat, is proposing the largest cuts in the history of TennCare, his state’s Medicaid program. To trim 9 percent of the TennCare budget, he would establish a $10,000 cap on inpatient hospital services for nonpregnant adults and would limit coverage of X-rays, laboratory services and doctor’s office visits.

“I have no choice,” Mr. Bredesen said.

Saturday, February 20, 2010

New York State Builds Coalition


The 2010-11 Executive Budget would require seniors and people with disabilities who need more than 12 hours of Medicaid personal care services per day to switch to other programs that are not designed to meet round-the-clock needs caused by quadriplegia, Parkinson’s, stroke, Multiple Sclerosis, Alzheimer’s disease, etc. By limiting access to services for the most disabled – 4,268 of the 67,937 people receiving personal care services - the cap will cause unnecessary nursing home placement of people who can and do live in the community, violating the 1999 Supreme Court Olmstead decision and the Americans with Disabilities Act.

Activists in New York State are seeking your help! You can send a quick online letter to help stop the caps at Click today!

The New York State Coalition includes the following groups:

ADAPT – NYS; Alzheimer's Association, New York City Chapter; Alzheimer's and Aging Resource Center of Brooklyn; Bronx Independent Living Services; Brooklyn Center for Independence of the Disabled; Catskill Center for Independence serving Delaware, Otsego, Schoharie, and Chenango Counties; Center for Disability Rights, Rochester; Center for Independence of the Disabled in New York (CIDNY); Cerebral Palsy Associations of NYS; Cerebral Palsy of the North Country - St. Lawrence, Franklin, & Jefferson Counties; The Children's Aid Society; CLC Foundation, Inc., Trustee For The CLC Pooled Trusts Iⅈ Consumer Directed Choices, Inc.; Consumer Directed Personal Assistance Association of New York State, Incl Disability Advocates, Inc. (serving Albany, Clinton, Columbia, Dutchess, Essex, Franklin, Fulton, Greene, Hamilton, Montgomery, Rensselaer, Saratoga, Schenectady, Schoharie, St. Lawrence, Ulster, Warren and Washington counties); Disabled in Action of Greater Syracuse Inc.; DOROT, Inc.; Empire Justice Center (all NYS outside of NYC); Enable, Syracuse; F.E.G.S Health and Human Services System; Options/CDPAS, Newburgh -- Dutchess, Orange, Sullivan & Ulster Counties; JASA/Queens Legal Services for the Elderly; The Legal Aid Society, New York City; Legal Services for the Elderly and Disabled, Buffalo; Lenox Hill Neighborhood House; Main Street Legal Services, Inc., CUNY School of Law; Medicaid Matters NY (140-member statewide coalition); Metropolitan Council on Jewish Poverty
MFY Legal Services, Inc.; Morningside Retirement and Health Services (MRHS); National Center for Law and Economic Justice; New Yorkers for Accessible Health Coverage; New York Lawyers for the Public Interest; New York Legal Assistance Group, New York City; PHI (Paraprofessional Healthcare Institute); Regional Center for Independent Living, Rochester; Resource Center for Independent Living, Utica; Self-Advocacy Association of New York State, Inc.; Selfhelp Community Services, Inc.; United Jewish Organization of Williamsburg; United Spinal Association; UJA-Federation New York; Westchester Disabled on the Move, Inc.; Westchester Jewish Community Services.

Valerie Bogart, Selfhelp Community Services, Inc , 212.971.7693
Chris Hilderbrant, Center for Disability Rights, 585.546.7510

Home Care Protests in Missouri

From our friend Bob Williams:

Disabled protest state’s proposed cuts in home care
By Virginia Young
Post-Dispatch Jefferson City Bureau

JEFFERSON CITY — People with disabilities and their caregivers came to the Capitol today to protest a budget cut that could make it harder for the disabled to remain in their homes.

On the chopping block: personal care services, which include assistance with meals, dressing and bathing.

Gov. Jay Nixon’s proposed budget would limit personal assistance services that a person can receive under the Medicaid program to 3.5 hours a day, or 60 hours a month. Those with greater needs could appeal for an additional 20 hours a month.

Nixon’s budget counts on $8.6 million in savings — $3.1 million in state funds and $5.5 million in federal funds — from the cutback.

Many people on Medicaid receive more than 60 hours of personal care a month. They say that without the attendant services, they could be forced to move to nursing homes, which are more expensive and would cost the state more than home care.

At a Capitol press conference today, Bob Pund of Columbia, who was paralyzed in an auto accident 20 years ago, said he needs help “in nearly every aspect of my life. Attendants are like oxygen to me.”

Not only is it a safety net, it helps people maintain their dignity and quality of life, others said.

For more, see

Staunching a Loss: How States Lose the Bucks

From our friend Bob Williams:

Staunching a Loss

By Penelope Lemov February 17, 2010

By not opting out of a federal tax deduction, states stand to lose millions in revenues.

A few weeks ago, the Louisiana Legislature voted to allow the state to follow the federal tax code for the domestic production credit. The credit, enacted as Section 199 of the federal Internal Revenue Code, lets companies claim a tax deduction based on profits from "qualified production activities," a category that includes manufacturing and utility companies as well as such diverse business activities as food production and filmmaking.

Federal estimates suggest that allowing this deduction will reduce the revenue yield of corporate taxes by roughly 3.1 percent in 2011. States are not required to allow this deduction, and in the six years since the U.S. Congress passed the credit, 21 states and the District of Columbia have opted out. Twenty-five, however, have either done as Louisiana has and voted to allow the deduction or else they've taken no action to opt out of the credit. (Four states lack personal and corporate income taxes and so are unaffected.)

As the final year of the phase-in of the domestic production credit kicks in — and the cost of the credit to state income tax revenue rises — I talked to Nicholas Johnson of the Centers on Budget and Policy Priorities about the credit, how much it will cost states who have not acted and what states can do about it.

For more, see

Thursday, February 18, 2010

Blind Man Asks Georgia Lawmakers to Open Their Eyes

By Tina Terry
Story Published: Feb 17, 2010 at 11:06 PM EST
Story Updated: Feb 17, 2010 at 11:42 PM EST

Things like living on your own, cooking, and finding a job can be hard, if you have a disability. Walton Options, a local center that helps people do these everyday things, could soon lose a lot of its state funding.

Brian Mosley says he traveled from tragedy to triumph with their help.

"I just heard a noise and the next time I awoke I was at MCG."

That noise Brian Mosley heard nearly 15 years ago was a gunshot to his head. It was a random crime that's never been solved. It left him blind in both eyes at 30-years old.

"I had no access to any resources or anything as far as services or support for the blind," said Mosley.

Eventually, he found Walton Options the Independent Living Center showed him he could work again, helped him go back to school, and taught him skills that landed him a job.

The director of the facility says 75-percent of people with a disability are unemployed. That's one of the reasons why they say the facility is so important.

Nonetheless, it could lose a total of 14-percent of its income before the end of this year, due to state budget cuts. That's more than $60,000 dollars. The center's director says that means a cut back in services they provide to people with disabilities or getting rid of nearly 5 part time jobs. She and Mosley want lawmakers to see the big picture.

For more, see

Potential Budget Cuts in Utah

(KCPW News) Advocates are speaking out about steep cuts state legislators are making to Utah’s Medicaid program as they try to balance the budget. In a press conference at the Capitol Wednesday, the Utah Medicaid Partnership said reductions in these services will have a detrimental impact on the future of Utahns of all ages. Andrew Riggle, a public policy advocate at the Disability Law Center, said that Medicaid is a life support people rely on. He’s a beneficiary of state services himself due to cerebral palsy.

“For a good number of these services and supports that people access, there are no private alternatives. Either these folks can’t access private insurance, or the kinds of services and supports that they need aren’t covered by private insurance, or aren’t available in the amount that they need,” said Riggle.

For more, see

Kentucky Faces Potential Budget Cuts Meltdown

Coalition rallies for disabled

By Beth Musgrave -

FRANKFORT — With tears in his eyes, James Cheely paused before a House budget subcommittee Wednesday as he tried to explain his most important job title.

"I'm the father of a 21-year-old son, Bryan, that has a developmental disability," he said.
Cheely, a coordinator with the Special Olympics of Kentucky and a member of an association for the mentally handicapped in Barren County, was among dozens of people who asked legislators during a budget hearing to spare the mentally ill, mentally handicapped, elderly and chronically ill from budget cuts.

Adam McCoy of Nelson County got a hug from Gov. Steve Beshear during the 874 Coalition's rally.

Amy McCoy of Nelson County joined in the cheering before the start of a rally Wednesday for the disabled at the Capitol Rotunda in Frankfort. Advocates urged the legislature not to cut funds for the elderly and disabled.

Later in the day, the 874 Coalition — named for the estimated 874,000 people with disabilities in Kentucky — held a rally to repeat that message to lawmakers.

The rally came as House leaders are poised to unveil in coming days a two-year state budget that deals with a projected $1.5 billion shortfall in the General Fund. That plan does not include any major cuts to social services, said House Speaker Greg Stumbo, D-Prestonsburg.

However, the plan does remove about $220 million in General Fund money from the state's Medicaid program in hopes that Congress will approve more federal funds for the program by January. If that doesn't happen, Gov. Steve Beshear told those at the 874 rally, the state could lose $600 million in matching money from the federal government for Medicaid.
"We're going to have a total $800 million hole in the budget," Beshear said. "We don't need to be balancing this budget on the backs of the most vulnerable people in Kentucky."

House leaders also are considering cutting $90 million in professional service contracts and eliminating almost 250 political appointees across the three branches of government. That includes about 125 positions in the executive branch.

For more, see

300 Vermont Disability Rights Advocates Pack State House in Montpelier

By Peter Hirschfeld and Louis Porter Vermont Press Bureau - Published: February 18, 2010

MONTPELIER – Proposed cuts to human services contained in the Governor's fiscal year 2011 budget plan represent an "assault" on the dignity and welfare of Vermonters with disabilities, advocates said Wednesday.

About 300 Vermonters piled into the Statehouse Wednesday to decry cuts they say will dial back home-based services and other programs that allow them to enjoy independent lives in their communities. As the 20th anniversary of the landmark Americans with Disabilities Act draws near, they say, the latest budget plan threatens to undo decades of progress.

Administration officials, including Gov. James Douglas, have said such cuts, as unpleasant as they are, are necessary in a time when state revenues are dropping.

"We're not asking for handouts. We're asking for opportunities for people with disabilities to be active and productive members of society," Deborah Lisi-Baker, president of the Vermont Coalition for Disability Rights, told a throng of supporters in the Cedar Creek room late Wednesday morning. "We have a right to be counted as equal citizens and to have government be there when we need it."

Lisi-Baker's organization represents 27 disability-rights organizations operating in Vermont. Next year's proposed budget, she says, represents a clear and present danger to the tens of thousands of Vermonters living with disabilities.

For more, see

State Medicaid Budget Struggles in Kentucky, Florida, Georgia

Lawmakers Struggle To Find Solutions As Medicaid Programs Swell State Budget Gaps

Feb 18, 2010

The (Louisville) Courier-Journal: "Passport Health Plan, often praised for its efficiency as Kentucky's only Medicaid managed care venture, costs the state far more per person than the state's regular Medicaid program ... The assertion was made in a five-page letter sent Tuesday by state Medicaid Commissioner Elizabeth Johnson — and strongly disputed by Passport officials — to the staff of the House budget committee. The panel is considering an expansion of the Passport approach as one of many ways to save money to help plug a $1.5 billion revenue shortfall in the 2010-12 state budget" (Loftus, 2/17).

Associated Press/BusinessWeek: "With Medicaid costs now consuming 26 percent of Florida's budget, the upcoming session seems primed for a program overhaul. But legislators will tackle the issue amid a foundering pilot program, a class-action Medicaid lawsuit that could cost the state millions, all while waiting to see if and how a federal health bill will affect the state" (Kennedy, 2/17). Meanwhile, "a budget 'priority list' in the [florida] House Health Care Appropriations Committee identifies possible reductions that would amount to an overall 29 percent cut in mental health services statewide, according to the Ft. Myers News-Press (Gluck, 2/17).

The Atlanta Journal Constitution: "Hospital officials turned out in force at the state Capitol on Wednesday to oppose Gov. Sonny Perdue's proposed hospital tax, saying they preferred a tobacco tax to fill a massive Medicaid shortfall. … They called it a 'sick tax' and a 'bed tax.' They called it lots of nasty names, asserting that the 1.6 percent tax on patient revenues could increase health care costs, prompt job losses and postpone hospital improvements" (Schneider, 2/17).

Wednesday, February 17, 2010

ADA Poem by Frank Cuta

Birth of the ADA
By Frank Cuta

I wrote this ten years ago at the tenth anniversary of the passing of the Americans with Disabilities Act. It is designed to be read by Maya Angelou, who would drive through it with determination, strong and powerful--chewing through each line word by word. The tone starts out slightly angry and winds up jubilant at the conclusion.

Note to blind readers: I never did corral Maya Angelou but with the proper setting on your
screen reader and a little imagination you can probably get the general idea. Please do not read it with your screen reader speed turned up--it really ruins the effect completely. In Jaws you can temporarily turn down your speech rate by holding down control+alt and hitting the page up key a few times.


Birth of the ADA

Access denied rights stripped ripped off out raged dreams shattered
righteous wrath.
Shackled cast aside special treatment smothered bitter pill lynch mob
No ramps no trial no rights no Braille no doubt no clout legal rape.
hell fire burned bad endured forever fuse ignited now fire inside
virgin state.
Rallied round ground swell byte it off out in front fears ironed out
must not fail.
Not diverted not divided not denied determined directed pressure will
1990 pulled it off glorious new world give us wings everybody wins sweet
Revered prize red rockets ablaze blue bunting awesome all american
alabaster ADA.

Virginia Gov Pushes Deep Budget Cuts (Privately)

From the Washington Post:

In private, Virginia governor pushes deep budget cuts

By Anita Kumar

Wednesday, February 17, 2010

RICHMOND -- Virginia Gov. Robert F. McDonnell (R) has privately recommended cutting $730 million from K-12 education and $300 million from health programs, as well as changing the state retirement system and requiring 10 days of furloughs for state employees, all to help offset a $2.2 billion budget shortfall over two years, according to sources familiar with the plan.

The K-12 reductions would loosen the state's basic educational standards while reducing funds for support staff, supplemental salaries for coaches and teachers who serve as club sponsors, and health insurance for teachers.

The health cuts would reduce mental-health treatment beds by 232, take 5 percent in funds from community service boards that offer substance abuse and mental health treatment programs, and freeze enrollment for a program that provides insurance to low-income children.

The governor is also recommending millions of dollars in trims to public libraries, shuttering some state parks and phasing out all public broadcasting support over four years.

McDonnell has refused for weeks to release his proposals publicly, despite repeated requests from lawmakers and advocates. Instead, he and his staff members have been sharing recommendations with small groups of legislators for weeks behind closed doors -- a departure from the way governors have conveyed their budget priorities in Virginia for decades. The governor has scheduled a news conference on the budget for Wednesday, but it's not clear what he will announce.
A number of lawmakers and legislative staffers briefed on the proposals provided information about them to The Washington Post. They spoke on the condition of anonymity because McDonnell has not released the specifics publicly. McDonnell spokesman Tucker Martin declined to comment Tuesday.

For more, see

Tuesday, February 16, 2010

Double Victory from HHS OCR and Democratic National Committee

For Immediate Release: February 15, 2010

For Information Contact

Jennifer McPhail 512-627-5868

Nancy Salandra 215-779-1014

DNC Resolution Pledges Olmstead Support; HHS OCR Agrees to Meet

ADAPT's Defending Our Freedom Campaign: Two Weeks, Two Victories

Philadelphia, PA - Two weeks into ADAPT's Defending Our Freedom Campaign, there are already two victories. One, a resolution passed by the Democratic National Committee (DNC), has its roots in ADAPT's four-day and four-night protest vigil last July, held outside the DNC headquarters in Washington, D.C. despite torrential rains and no shelter for activists. The second victory is a meeting with staff from the U.S. Health and Human Services Office of Civil Rights (HHS OCR) scheduled for mid-April just prior to the spring ADAPT action in Washington.

On Thursday, February 4, ten members of ADAPT from across the nation attended the DNC Resolution Committee meeting in Washington, D.C. The committee unanimously passed a resolution that states, in part, "WHEREAS, efforts must be made on the state and federal level to eliminate institutional biases that unfairly discriminate against Americans with disabilities in obtaining long term service and support in programs such as Medicaid ... the DNC will encourage and support efforts to vigorously enforce the Supreme Court's Olmstead decision."
The Olmstead decision affirmed provisions in the Americans with Disabilities Act (ADA) that mandate people with disabilities should receive needed services and supports in "the most integrated setting," typically the community.

"Some people thought our protest outside the DNC last summer was an exercise in futility," said Jennifer McPhail, ADAPT organizer from Austin, Texas, "especially because so many of us who use wheelchairs slept outside each night, in pouring rain and wind, with only garbage bags or the occasional tarp for shelter. We had provided our own accessible porta-potty, but the DNC had it hauled away. Despite all that, we persisted in following the process laid out by the DNC, and now we have this historic resolution to show for all hell we went through last July."

Members of the DNC Resolution Committee included Christine Pelosi, daughter of House Speaker Nancy Pelosi, and Lee Saunders, assistant to AFSCME President, Gerald McEntee. AFSCME currently represents staff in many state operated institutions, but is working to support the Community Choice Act (CCA), legislation that would let older and disabled individuals choose to receive needed supports and services in their own homes instead of being forced into nursing facilities and other institutions by the institutional bias in the nation's Medicaid program. In addition to passing the resolution condemning the Medicaid institutional bias, the committee also pledged to sending both the resolution and all of ADAPT's educational materials on the CCA to every Democratic state and federal legislator in the country.

"With the resolution from the Democrats and our upcoming meeting with the folks from HHS Office of Civil Rights, we feel like we are gaining ground in this battle to become free, and stay free," said Nancy Salandra, ADAPT organizer in Philadelphia. "You would think that between this country's Constitution, and laws like the ADA, we should already have the right to live in our own homes and communities, but that's not how Congress has structured the funding for the supports we are entitled to receive. So, the resolution and the meeting are two more actions to make sure that the law is followed and our civil rights are protected."

ADAPT's Defending Our Freedom campaign continues to gather media reports of the harm being done to disabled and older Americans by state budget cuts. The campaign also welcomes stories of how people in the states are fighting back against the cuts. ADAPT is additionally encouraging people who want out of institutional settings and the people assisting them to file OCR complaints. ADAPT will follow up on those complaints at the meeting with HHS OCR and the Department of Justice (DOJ), and will hold the HHS OCR staff accountable for resolving the complaints.

Send media reports, and "fighting back" accounts and pictures to

See those reports, and accounts and pictures on

File a complaint at
and send a copy to

Sign on to support the Defending Our Freedom Campaign at, and see the growing list of supporters at

Additional information on the Defending Our Freedom Campaign can be found at

NATIONAL ADAPT MAILING LIST - Adapt Community Choice Act List

Sunday, February 14, 2010

Hundreds Attend Texas Hearings on Budget Cuts

From the Austin

By Tim Eaton Thursday, February 11, 2010, 05:54 PM

More than 300 people turned out on a rainy afternoon to hear how Texas’ health and human services agencies might cut their budgets.

Representatives from several health and human services departments were on hand to hear from the public before they present budget-cutting options to Gov. Rick Perry, Lt. Gov. David Dewhurst and House Speaker Joe Straus.

Under the Health and Human Services system umbrella there are several entities: The Department of Assistive and Rehabilitative Services; the Department of Family and Protective Services; the Department of State Health Services; the Department of Aging and Disability Services and the Health and Human Services Commission.

The departments were told to protect some vital areas. The leaders said that “there should be no reductions to benefits or client eligibility levels in the Medicaid entitlement, Children’s Health Insurance Program and foster care programs.”

Click here to read the letter.

Many of the cost-cutting options could be made through hiring freezes, the agencies said. But the Department of State Health Services also mentioned a reduction in trauma funds and the elimination of 200 beds and 420 full-time employees at four mental health hospitals.

The possible cuts also included a 1 percent reduction in the rates paid to health care professionals providing care to Medicaid recipients.

See an earlier blog here. And read a HHS-generated breakdown of possible cuts here.

Advocates for the elderly, the sick and those people who use services provided by Texas’ health and human services agencies spoke at the hearing.

Anne Dunkelberg, associate director of the non-profit Center for Public Policy Priories, which advocates for low-income Texans, said her organization was concerned about the rate cut to doctors and health professionals.

“Doctors right now in Texas Medicaid are getting paid around 65 percent of what Medicare pays,” she said. “The end result is you have lots and lots of doctors who won’t take Medicaid patients.”

David Thomason, senior vice president at the Texas Association of Homes and Services for the Aging, told the health and human services leaders that cutting services at this point will result in care for seniors being jeopardized.

Eva DeLuna Castro, the general budget analyst of the Center for Public Policy Priories, also spoke and told the room that there’s no real reason to make cuts right now. This fiscal year doesn’t end until August of 2011, and there’s enough money to cover operations through next fiscal year, too, she said.

Instead of calling for cuts now, lawmakers should return to work in January of 2011, and then tap into the $9 billion Rainy Day Fund to keep agencies going, Castro said. They also should find new ways to raise revenue, she added.

In their letter, Perry, Dewhurst and Straus said that action is needed now because of “uncertainly of the state’s short-term economic future. They also said they were told by the state comptroller that the recession has substantially weakened the tax revenues the flow into state coffers.

The health and human services leaders will submit their recommendations on Monday and Tuesday.

Tennessee Debates Bredesen's Approach

Editorial from the Tennessean:

There are times when evenhandedness can backfire. The proposed cuts to Tennessee's mental health services are a case in point.

By calling for cuts in virtually every segment of state government, Gov. Phil Bredesen appears to have fended off major opposition to his austere budget plan for 2010-11. But while most of the proposed cuts are tough, prudent, even admirable in the face of the state's continuing revenue shortfall, mental health is one area that should have been protected.

The state Department of Mental Health and Developmental Disabilities had to eliminate 672 positions, or a fourth of its staff, in 2008 and 2009. It also had to get rid of more than 247 beds at its state hospital. The budget for 2010-11 proposes $9.4 million in cuts, and it raises the question: What will happen to the many Tennesseans who rely on state help with mental health problems?

To its credit, the Bredesen administration has so far managed to keep the $21.5 million for the Behavioral Health Safety Net. That program helps the most severely ill mental-health patients who do not qualify for TennCare and do not have private insurance. But this does nothing for lower-income Tennesseans who get help with their mental illness through TennCare.

Jindal Announces LA Budget; Lays Out Disability Services

Louisiana's Republican Governor Bobby Jindal recently announced the Louisiana state FY 2011 budget proposal with a clear outlining of impacts on disability services. To read the outline, go to:
It's a mixed bag, mainly because of the way funding streams are set up....state v federal, public v private. Go check it out.

300 Protest Disability Service Budget Cuts in Kansas

The Wichita Eagle
Jeff Tuttle/The Wichita EagleAldona and Pat Carney, of Wichita, with their son, Neil, on Friday (Feb. 12, 2010).

You can almost hear the weariness in their voices as Pat and Aldona Carney tell their story.

The youngest of their five children, 15-year-old Brian, has severe autism.

He also has pica, a medical disorder characterized by an appetite for inedible things. He has eaten insulation, charcoal briquettes and parts of mattresses.

Brian has tried to eat light bulbs. When he got a tooth caught while biting the carpet, he yanked the tooth out by its roots.

"He's a 24-7, one-on-one child," Aldona Carney said. "He's up at 3 in the morning a lot of times. Either Pat or I are up a little bit later, because he's tearing things up if we're not.

"We love him, he's ours. We want him in our house, but we also know we need help."

Because of state budget cuts, there is less help for the Carneys, others with disabled family members and Kansas' disabled citizens overall.

Friday, more than 300 people attended a rally at Exploration Place to tell their stories and help make the Legislature aware what losing disability services has meant.

"More than a generation ago the state saw the futility of state institutions," said Marla Flentje, who has a 34-year-old son with Down syndrome. "The state made a promise to help the disabled so they could be at home and work and play in the community."

That promise, she said, has been broken.

A 10 percent state budget cut has sliced $30 million from Medicaid for disability services, said Tom Laing, executive director of InterHab, a statewide resource center to support those with disabilities.

But state grants for the disabled have also been reduced drastically, cutting out funds for those who don't qualify for Medicaid.

Between Medicaid and grants, Sedgwick County alone has lost more than $3.4 million this year to help the disabled.

"When we go to the Legislature, they say, 'Money is tight, you need to be realistic,' " Laing said. "I say, 'Oh, you need to be realistic. These people's lives are vulnerable. There's no margin for the kind of error that budget cuts are creating. Have you met the people you're hurting?' "

For the Carneys, the cuts have meant losing 16 hours of respite care per month through Rainbows United, a Wichita nonprofit that serves children with special needs and their families.

That leaves the Carneys with only 40 hours each month. Not enough, they say, for a family with a child that demands as much care as Brian.

Pat Carney attributes his wife's migraines to the stress of caring for Brian.

Brian attends Levy Special Education Center. But when school isn't in session, someone has to be with him at home.

Aldona Carney used to teach school, then switched to substituting so she could be with Brian more. But she recently had to eliminate that job."I literally couldn't get in the shower in the morning," she said, "because I had to watch him. He can be very destructive."
Courtney Carpenter's 6-year-old son, Devin, is a kindergartner at Benton Elementary with a loving smile.

Devin has a rare chromosomal disorder known as Trisomy 22. He's been blind and deaf since birth and has developmental issues.

So far Carpenter hasn't lost any of the respite hours she uses with Rainbows.

"I'm just praying that it doesn't happen," she said. "That's my biggest fear. I don't know what I would do then."

In fiscal year 2009, Sedgwick County received $2.4 million in state grants for the disabled. It will be $382,000 in 2010, said Chad VonAhnen, director of the Sedgwick County Developmental Disability Organization.

That means Marc Lyon, 45, no longer has a job through Starkey Inc., which serves people with developmental disabilities.

"He's just lost now that he's home with me," said Betty Lyon, Marc's 80-year-old mother. "He asks me every day when he can go back to work."

Marc was born with brain damage and had worked at jobs through Starkey — such as cleaning shelves at Dillons — for 20 years. But his grant money was eliminated Jan. 1, and so was his job.

Because he doesn't have overwhelming health or behavioral issues, he's not eligible for Medicaid.With the grant money gone, so is his safety net.

Betty Lyon called Sen. Les Donovan, R-Wichita, who in turn called Jamie Opat, Starkey's communications director.

"He wanted to see if we could get him back in at Starkey," Opat said. "This is the real face of state budget cuts. I think it was an a-ha moment for him.

"There's no easy fix just to get somebody back in."

Agencies that serve the disabled are trying to be creative, such as increasing the size of group homes. That works against the original purpose of eliminating institutions so people with disabilities would be in smaller settings.

Those at Friday's rally plan to contact their legislators about restoring funds, send them videos with their stories and travel to Topeka to deliver their messages.

"We have to be Brian's voice," Aldona Carney said. "We all have to be the voices for those who can't speak up."

Read more:

Friday, February 12, 2010

Budget Cuts Fight in North Carolina

Group files suit against head of DHHS

Posted: Feb. 11 7:35 p.m.
Updated: Feb. 11 7:50 p.m.

Raleigh, N.C. — A disability rights advocacy group filed suit Thursday against the leaders of the state Department of Health and Human Services and a local health service provider alleging that planned cuts in funding for mental health services violate the rights of patients and inhibit their ability to live independently.

The two men, identified in the lawsuit as Clinton L., 46, and Timothy B., 44, are both developmentally disabled and mentally ill. They have been living independently with the help of federal and state support, according to the suit filed by Disability Rights North Carolina.

DRNC filed the suit to ask for a temporary restraining order against Piedmont Behavioral Healthcare and DHHS in implementing the cuts. Lanier Cansler, secretary of the Department of Health and Human Services, and Dan Coughlin, CEO and director of Piedmont Behavorial Healthcare are named as defendants.

The plaintiffs are representative of a class of individuals who receive services from Piedmont Behavioral Healthcare, a local management entity. A DRNC search of public records found 35 members of the class, spokeswoman Vicki Smith said.

PBH, which is funded by the state, plans to cut the rate it pays for those services as a result of state budget cuts.

According to the suit, PBH's planned cuts would prompt service providers to cease offering the support the plaintiffs need to live on their own. The suit alleges the cuts planned by DHHS and PBH violate the Americans with Disabilities Act.

Piedmont’s plan to cut the reimbursement rate for supervised living services from $162 to $116, scheduled to take effect on Monday, would constructively abolish that service for PBH’s clients, as providers would no longer offer the service at that rate, DRNC said in a statement released Thursday.

Both parties have agreed to keep the current reimbursement rate in place until a hearing on the suit Wednesday.

This is the second such suit filed against the state, but the first class-action. DRNC brought suit in December on behalf of two patients served by the Beacon Center, the local management entity serving Edgecombe, Greene, Nash and Wilson counties.

A judge granted a preliminary injunction against service cuts by Beacon, pending a full hearing on the matter. A date for that hearing has not been set.
Reporter: Bruce Mildwurf

Letter from Tennessee

Sent to the DOF Blog this week:

Dear Friend,

My husband and I have been moving from town to town every year to be employed. We will buy a home after a period of time, and then learn the permanent job we were told about, is not longer available. We just left our home in Seminole, Alabama and we are renting a home in Memphis Tennessee. Paying two mortgages is costly. We like living in a home in the community, and not in assisted living. Keeping our independence is crucial to us.

Please ask congress to enforce the Olmstead Act, and keep long term support services in place. (CFC).

Just because a person has a disability, should not make any difference where one wants to live. Freedom is the number one deciding factor in the decision, and it is a matter of dignity.

Deb and Jim

Wednesday, February 10, 2010

DOF Facebook Cause Link

If you have been looking for our Facebook Cause page, try logging into Facebook and using this link: Hope that helps! Join us! We have 231 supporters so far...can we get a thousand?

Nevada, Pennsylvania, Virginia Updates

Passed on by Bob Williams:

February 10, 2010 – That’s The Way It Is: (Feel free to repost in full or in part)

PUBLIC OBSCENITY IN NEVADA: Former U.S. Supreme Court Chief Justice Warren Burger said that people know obscenity when they see it. The same is true of obscene public policy. Arguing that the state could no longer afford to pay for "bloated government services", Nevada Governor Jim Gibbons has proposed to cut 109 million in state Medicaid funding. According to news reports, such cuts would results in the “ration(ing of) adult diapers, eliminate denture and hearing-aid programs, and force personal care assistants to buy their own disposable gloves” as well as reduce services for persons with traumatic brain injury. "Cutting them off of dentures, hearing-aid services and diapers, “Assembly Speaker Barbara Buckley, D-Las Vegas, commented, “I don't know how we look the elderly in the eye." Not only would these cut degrade the civil rights and essential humanity of Nevadans with disabilities, their families and personal assistants but also expose them to potential health risks as well. See:

A FRIEND IN PENNSYLVANIA: When most other States are slashing Medicaid funding for community living, Pennsylvania Governor Ed Rendell says he wants to invest in making “major progress rebalancing and restructuring the long-term living system to ensure that older Pennsylvanians can age in place at home with dignity and a high quality of care.” The Governor’s 2010-11 budget includes a $17.3 million increase for direct services. “Over the last eight years, funding for aging and long-term living services has grown by $1 billion, a 307-percent increase. “ According to a release from his office, “Nursing homes will be eligible for $24 million more to support the increased needs of a more complex nursing home population. In addition, nearly 1,700 additional older adults and 1,525 additional persons with disabilities will be able to receive home- and community-based services so that they can live more independently. Finally, 4,000 additional older Pennsylvanians will be able to get their prescription drugs through the PACE and PACENET programs.The gains for older Pennsylvanians and persons with disabilities would not have been sustainable without major initiatives to rebalance the long-term living system. The share of consumers served in their home has doubled since 2003. Because home-based services are more cost-effective, scarce public resources can be stretched further.”” See:

LIFE DEFERRED: When Sam May graduates from a Fairfax Virginia high school next year, he should be able to look forward to his life – finding a job, attending community development, making plans to move into their own home someday. Instead, May, who has significant disabilities due to Fragile X syndrome, will have his life and future put on indefinite hold by being placed on a waiting list along with over 600 others with intellectual and developmental disabilities. At least half of these persons have been deemed by the county to have an “urgent need” for such Medicaid waiver services as personal assistance, supported employment and other supports to remain in their homes and communities. In 2007, Virginia agreed to put more resources into increasing accessing to these services and supports and to fall the waiting list. However, impending budget cuts threatens to make an already precarious and dire situation even worse. See:

Tuesday, February 9, 2010

Join DOF on Facebook!

An excellent way to keep up with news on Defending Our Freedom is to join our Facebook Cause! Just search on Facebook for "Defending Our Freedom' and you should be able to find us. This is a great way to connect with others who care about fighting state budget cuts and enforcing Olmstead. Recruit your Facebook friends and FREE OUR PEOPLE!

Roundup of state fights from Kaiser Health News

We were made aware of Kaiser Health News' daily roundup by Bob Williams. To view updates on funding cuts that affect people with disabilities in Virginia, Tennessee, New Hampshire, Wisconsin and Alaska, go to You can sign up for this daily alert at the bottom of the story.

Virginia Medicaid Funding Endangered; Endependence Fights Back

From Hampton Roads, by Elizabeth Simpson for the Virginian-Pilot:

Virginia's budget-setting season is always a nail-biting time for people like Barbara Kimble.

Will there be enough money to help her and her husband care for their 25-year-old mentally disabled son at their Chesapeake home, or will they have to wait another year - or two, or three?
This year, the news was about as bad as it has ever been. Not only is there no additional funding for the Medicaid waiver program that helps families keep disabled or elderly relatives at home instead of at institutions, but there's a one-year freeze on the existing waivers.

That means even if someone already in the program dies, drops out or moves out of state, the money for that slot can't be used for someone on the waiting list.

"People will be institutionalized who never, ever would have considered it," said Maureen Hollowell, director of advocacy and services at The Endependence Center in Norfolk, which helps the disabled. "There will be no option for them."

For the full story, go to:

Monday, February 8, 2010

Illinois Introduces Managed Care Pilot to Save $$$

Could it be happening in your state?


CHICAGO - The state of Illinois is planning a pilot project to enroll Medicaid recipients in six counties in managed care, an effort being criticized by advocates for the developmentally disabled.

Illinois' Medicaid agency announced Monday it's seeking proposals from managed care organizations to run the program. It would affect 40,000 adults with disabilities and older adults in DuPage, Kane, Kankakee, Lake, Will and suburban Cook counties.

The state expects the program to save taxpayers nearly $200 million in its first five years.

Advocates for the developmentally disabled are concerned the effort to save money may lead to rationing of health care. Tony Paulauski is executive director of the Arc of Illinois, a group advocating for the developmentally disabled. He says managed care organizations have little experience with developmental disabilities.

New York State Deals With Governor Paterson

Check out this video on the state budget fight in New York: The video is captioned.

On Monday, February 1st, a group of New York disability rights advocates met with the Governor Paterson and key staff regarding his budget proposal to cap personal care at 12 hours per day.

After delays with security, we started the meeting with quick introductions and a brief context for the meeting. At about that point, the Governor walked in; we did a quick round of re-introductions and got back to business.

Throughout the meeting, the Governor played a calming role as his staff and the advocates argued. He expressed a willingness to admit that their proposal might have negative consequences that they had not intended. The advocates poked holes in the administration's proposal, but the Governor would intervene and say that they had already admitted that the proposal might not be perfect, suggesting the group "move forward"... then his staff would start defending the proposal again.

Michelle, who is directly affected by the cut, explained the effect that this proposal would have on her. She explained that just days before giving birth to her daughter, she got her spinal cord injury and became a quad. She left the hospital to live with her mother who was now taking care of both her and her newborn daughter. She wasn't ever able to get the personal care she needed in Seneca County so she moved into a less accessible apartment in Ontario County where she could finally get services. She pointed out that she now must take a 45-minute drive to take a shower, but that's how important her independence was to her. She emphasized that people who get this level of service really need it, and it clearly wasn't that easy to get. She spoke about how she was finally able to raise her own daughter and be a mom. And she spoke about how she feared that losing the services would mean she would lose her freedom... and her family.

So we asked the administration why they hadn't used the cost-savings proposals that we had developed in November, long before any of these cuts were proposed. Our proposals didn't eliminate community-based services. Instead, they actually promoted the independence of people with disabilities by maximizing community-based approaches and cost-effective consumer-directed services. We acknowledged that our original proposals may have been aggressive, so we had ratcheted them down. Even so, we still projected $30 million to $90 million in savings for the first year, easily covering the saving the administration expected from capping personal care.

In a nutshell, our proposals said that the state could save money by moving people from nursing facilities to the Nursing Facility Transition and Diversion Waiver. The staffers felt that our target of 1,300 people statewide was unrealistically aggressive, but never explained how they felt nearly 5,000 people could be enrolled in NYC alone under their proposal. They also argued that daily savings rate we used was too high, even though our revised version was taken straight from the DOH's TBI Waiver report to CMS.

The staff also complained that our proposal assumed that we would close nursing facility beds, but there isn't the political will to make that happen. We argued that the state, particularly in such difficult fiscal times, shouldn't prioritize the institutions over people. At this point the Governor stepped in and said that they wanted some time to review our proposals. We urged them to eliminate the 12-hour cap in their 21 day amendments.

The pessimistic side is that the staff seemed committed to the cap.

The optimistic side is that they agreed to look more closely at our revised proposal. The Governor has clearly made this something they have to address. They know that they are going to be flambéed every step of the way with the 12-hour cap.

We don't know what will happen, but whatever happens, this is only the start of the process!

To learn more about CDR, see

Friday, February 5, 2010

First, the Access; Then, the Advocacy?

Over the months of January and February, staff and consumers at Access Living in Chicago (many of whom are also ADAPTers) have been visiting our state legislators to educate them on the importance of not cutting human services in Illinois. Today, Rachel Siler, Amber Smock and Tom Wilson visited the Chicago office of State Senator Antonio Munoz, and came across a problem our community faces not infrequently: lack of physical access to our elected officials' offices. We cannot let stairs or lack of other forms of access stop us, however; our goal is to FREE OUR PEOPLE! The photo at left shows Rachel on the left in a power chair and Amber on the step to Munoz' office. We will be scheduling a follow up meeting in an accessible location to advocate against state budget cuts and to educate about the people's need for access to politicians' offices.

Thursday, February 4, 2010

From New York State: Equal Rights Are Not a Budget Item

Bigotry never trumps freedom and freedom is not possible without equal rights.

And so it is that people with disabilities are being given the message that their equal rights are depend on the state of the economy and thus relegated to a budget item. ADAPT, the country’s most prestigious disability rights organization in this writer's view, has launched what is calls a Defending Our Freedom campaign to address the carnage being inflicted on the lives of people with disabilities. Across this country state budget cuts are forcing people with disabilities, as well as seniors, back into nursing homes, all this in direct violation of the 11-year-old United States Supreme Court Olmstead Decision which says Americans with disabilities have the right to live in the most integrated settings.

For more, see

Wednesday, February 3, 2010

Americans with Disabilities Bleeding from Budget Cuts

For Immediate Release:
February 03, 2010

For information contact:
Bruce Darling 585-370-6690
Rahnee Patrick 312-320-5111
Marsha Katz 406-544-9504

Americans with Disabilities Bleeding from Budget Cuts:
Angry, ADAPT Fights Back

Denver, CO -- ADAPT today launched its ADA 20th Anniversary Campaign demanding that the Administration and the U.S. Department of Justice aggressively protect the civil rights of disabled Americans and enforce the Americans with Disabilities Act. The campaign, Defending Our Freedom:
ADAPT's Call to Action for Home and Community in America, also calls on people with disabilities and those who are older to file civil rights complaints if they have been forced into institutional settings, denied community services, or have had their community services reduced. And, finally, the campaign will collect personal and state stories about the effects of budget cuts, and the efforts to fight back against the cuts.

"People with disabilities are literally "bleeding to death" already because of state budget cuts, and there is no end in sight," said Rahnee Patrick , an organizer with Chicago ADAPT. "When states cut budgets, the first things on the chopping block are what are called "optional services," the services that states can choose to provide, but aren't mandated to provide...only they aren't so optional for us. Those are the services that pay aides to help us out of bed, get dressed, get ready for work, eat, and live in our own homes instead of being forced into nursing homes."

Nearly every state in the union is currently planning budget cuts that impact the ability of people with disabilities and older people to stay in their own homes. Federal law currently mandates states to provide nursing home services. Providing home and community-based services is considered "optional" under the law, which is why those services are usually cut when states are reducing their budgets. Because there is no provision in the law that tells states they must also provide the same services in a person's own home, countless thousands of people across the country are forced every day into nursing facilities and other institutions when they need help with the activities of daily living.

"For all these 20 years since the ADA was passed, Congress has refused to remove the "institutional bias from the law," said Mike Oxford, organizer from Kansas ADAPT. "That institutional bias has made older and disabled people America's political prisoners. We are deprived of our freedom, and deprived of our civil rights, and that is totally unacceptable, and most certainly illegal. Apparently, Congress is too politically scared to address the issue, but we aren't, and we won't stop until we have the first class citizenship and rights that our Constitution guarantees us!"

ADAPT is calling on individuals and groups of people who are aging or have disabilities to send in stories of cuts in services. ADAPT will collect these stories and post them on the ADAPT website in a "People's Forum to Fight Back." Stories and pictures can be viewed on the ADAPT Defending Our Freedom blog at . The ADAPT website will also have a link to the forms that people can use to complain to the Health and Human Services Office of Civil Rights about a violation of their civil rights. Violations include being forced into a nursing home, not being allowed to move from a nursing home or other institution back into the community, or having home and community services decreased due to budget cuts so you don't have the hours you need.

ADAPT will also post on its website pictures of you visiting your state and federal senators and representatives, and your state Medicaid and other government officials. These pictures and descriptions will create a public record of the disability community's efforts to stop cuts, and will inspire others across the country to speak up and speak out, too. Send your personal "cut" stories, and your pictures, with a description of what occurred and what you were told by your public officials, to then watch for them on the blog. Let's hold public officials accountable for what they tell us!

FOR MORE INFORMATION on ADAPT visit our website at

Tuesday, February 2, 2010

The Center for Disability Rights Visits Governor Patterson

To see the video, go to Governor Paterson visited Rochester for an interview on WXXI, CDR was there protesting the NY state budget. Governor Paterson met with Bruce Darling and also agreed to further talks on Monday 02/01/2010.