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

Common People Holding Our Government Accountable for Enforcing Our Rights

Friday, July 30, 2010

Attendant Speaks Out on Monroe County Crisis

Unwarranted Attack on health care

Today I learned from the Monroe County, NY government that I will no longer have a job as of August 1. I am a attendant with the program Consumer directed health care of New York State. The County pulled the contract from 4 "so called" reports of abuse/neglect. They stated 12 cases of abuse or neglect, but found 4.

One case was reported that a young man was left alone, those attendants were fired, case closed. One man who is the director of a committee was not in attendance, seems to me that he may well be the mole that caused the cancerous attack that led to the downfall of the agency. The County never really tried to work out the issues, they just handed us our walking papers.
It seems that politics in New York State have gone from the hand shake, baby cooing to let's see how much mud we can throw at people. It is deplorable that you can't close nursing homes, but you can throw 3 hundred people onto a hot bed of issues that disabled people get all the time; the shaft. The real losers aren't the attendants from Center for Disability Rights, but the consumers who have their aides in place and now have to scramble for a new agency.

The other agencies are like what I used to have to deal with in the assisted living places. They pay jack squat, give no medical insurance, 3 days per year for sick time, and NO VACATION. By the time I make my money most of it has gone to a roof over my head, electric & gas, food, car/car insurance. Not much money left after that for medical or dental. It is hard work to lift, push, pull all day long; but I want to be treated like I matter. The Center for Disability Rights even gave me a bonus for Christmas!!! I was floored, a bonus? I usually get a lousy bottle of wine, but from Emeritus; one year I received NOTHING !!! But, my boss' all received gifts and bonus'. I am the foundation of an agency, I can make or break your agency; so please treat me well and I will try really hard to please you.

Rochester Disability Community Under Attack

The Center for Disability Rights is under attack - Tell Maggie Brooks to Restore the CDPAS Contract by phone and in person!

The Center for Disability Rights is under attack by the Monroe County Executive, Maggie Brooks. Without warning, on July 22nd, CDR received a terse, 5 sentence letter informing us of the contract termination with no explanation included. All of our CDPAS consumers received a letter the same day telling them that the county is terminating its contract with CDR and that they have until just August 1st to choose from one of five for-profit agencies for their Consumer Directed Personal Assistance.

The next day, we received from a friend in the local media, a copy of a three page letter from the County Executive to the media. The letter was filled with blatant falsehoods mixed with misunderstandings of the roles of CDR and the county in the CDPAS program. Here is CDR's letter to Maggie Brooks debunking her allegations against CDR: Videos of consumers refuting the county's charges are here: Share these; make them go viral as meanwhile, Brooks continues to use the media as a buffer to not have to talk with us. Many more documents available on CDR's website at

Our consumers and their attendants have been thrown into chaos and Ms.
Brooks refuses to talk to them. Nearly 300 consumers are in danger of losing their attendants and possibly their services outright.

Currently consumers, supporters and staff have camped out in front of the County Building on Main Street in Rochester. We have been out there 24/7 since Monday and will continue until this is over.

We need your help!


Call Maggie Brooks and urge her to restore CDR's contract for the sake of the hundreds of people who like their services and want to continue them.

Then ask at least two friends to do the same.

Be respectful, but be firm. Her phone should not stop ringing!

County Executive Maggie Brooks: (585) 753-1000


The Center for Disability Rights and Rochester ADAPT will be having a rally on Monday, August 2, 2010

11:00 AM at 39 West Main Street, Rochester, NY

Although this has been mentioned in the media, key issues are not being raised or addressed:

- Monroe County is not explaining why CDR's program is still being shut down when most of the people who were investigated are actively refuting claims that they were neglected.

- Monroe County is not explaining why a successful program run by a disability-led, consumer controlled organization is being dismantled and given to for-profit entities.

- Monroe County is not explaining why it continues to refuse to acknowledge the voices of the people with disabilities who want to stay and let them make their own choices.

Monroe County folks are the same people who used the R-word.

Now they are talking ABOUT us, and refuse to talk WITH us.

Please come and help us make our voices heard!

39 West Main Street, Rochester, NY

Monday, August 2, 2010

11:00 AM

We will be continuing our vigil throughout the weekend.

People can feel free to come and join us!

Wednesday, July 28, 2010

Defending Our Freedom in Rochester, NY: Call Maggie Brooks and Tell Her Don't Take Away Our Choice!

By The Roving Activist

For three days, I have been on the sidewalk with the folks from the Center for Disability Rights (CDR) as we fight for the freedom of our sisters and brothers who use the Consumer Directed Personal Assistance Services (CDPAS) program through CDR.

On July 22, 2010, CDR, and each of its 300 CDPAS consumers received a letter from the Monroe County Department of Human Services stating that CDR's contract with the county had been terminated, and that consumers had until August 1, 2010 to find another agency. No reason was given for the termination of the contract.

A list of five agencies was provided for consumers to transfer to in order to receive services. All are for-profit, and two have central offices that are located out of state. In a separate letter to the media, the county made several allegations which were either patently false, or misrepresentations of CDR responsibilities. CDR responded to this letter with facts and documentation so that the truth would be known.

On Monday, July 26, 2010, the 20th anniversary of the signing of the ADA, over 300 people packed a forum originally organized to celebrate the ADA, but it quickly became a venue to express their outrage over what had happened, and how it would have a devastating impact on their lives.

After the forum, 100 activists and CDPAS consumers and attendants, along with CDR staff and ADAPT members marched to the Monroe County Building to demand the restoration of the CDPAS contract to CDR. Over 30 people, including myself, held vigil through the night in front of the building. Today, Wednesday, is day three of our vigil at the County Building. Maggie Brooks, the Monroe County Executive, has dug in her heels and is refusing to meet with CDR, or restore the CDPAS contract.

I am appalled at the actions of Ms. Brooks and Kelly Reed, Commissioner of the Monroe County Department of Human Services. They are well aware of the fact that their decision has done three things: It has taken away our people's ability to direct their own attendant services (something unheard of in traditional home care agencies), it has endangered their lives because traditional home health agencies will not accept or cover those with complex needs, and those who need 24-hour care, leading to health deterioration, and it has put people at risk of placement in nursing facilities, where neglect and substandard care is common. They simply don't care!

The county also doesn't seem to mind that due to it's actions, it is potentially in violation of Olmstead, and lawsuits from consumers and their families are a likely result, as well.

I am sure that the county knows the status of the agencies that it is referring CDPAS consumers to transition to. According to one worker who called each agency, one of the agencies is closed, another is not accepting new clients, and the others are saying that they don't have the human resources to deal with the influx of clients with complex needs.

These machinations by the county are in my opinion, nothing more than politics in action. It is a ploy to silence the advocacy, activism, and voice of CDR and it's consumers. I can't help but believe that when I hear stories of people dying of neglect in the county jail, yet that contractor still has a contract. It is my understanding that children have died in the care of the Monroe County Department of Human Services, yet, Kelly Reed, it's Commissioner, still has a job.

CDR has not neglected CDPAS consumers, and no one has died, yet CDR's contract has been terminated without due process. When the County tolerates long-standing abuse and neglect of clients in other programs that it oversees, but terminates the contract of an agency well-known in the community as outspoken disability rights activists and advocates, it is a clear sign that big government is attempting to silence the voices of downtrodden people.

Call Maggie Brooks, Monroe County Executive, at 585-753-1000, and tell her don't take away our choice. Restore the CDPAS contract to CDR!

Sunday, July 25, 2010

Without FMAP Extension, More Cuts Loom

This story is from New York, but the FMAP extension problem is part of what is threatening funding for services that support our freedom to live in the community. The US Congress needs to extend FMAP asap! This affects most states, particularly ones facing serious budget crises.

Counties to lose millions in federal medical reimbursements

By Don Lehman Posted: Sunday, July 25, 2010 3:51 pm

The term FMAP may not mean much to the general public, but to local officials they are four very important letters.

The acronym stands for Federal Medical Assistance Percentage, a program that increased Medicaid reimbursement percentages during the recession and expires at the end of the year unless Congress extends it.

Warren County officials are expecting to receive $3.2 million in FMAP funds this year, and were expecting at least a portion of that money next year as well if the reimbursement remained heightened for the first six months of 2011 as expected.

But so far, Congress has not approved an extension and national media reports indicate many think it won’t as a way to rein in expenses.

Not having that money would leave a hole in the Warren County budget that would require a tax increase of 9 percent if budget cuts weren’t made, said Fred Monroe, the Chester supervisor who is chairman of the Warren County Board of Supervisors.

Monroe sent a letter Thursday to U.S. Rep. Scott Murphy, D-Glens Falls, and the state’s U.S. senators asking that Congress extend the program.

"It’s an extension everyone thought was going to happen, but it hasn’t happened," Monroe said. "We’re going to have some tough choices if that FMAP money doesn’t come through."

The county will see some savings next year when its contract with the Hudson Falls trash plant ends, but the FMAP loss — along with what many believe is an inevitable cut to state aid when a state budget is passed — will still be a hurdle, Monroe said.

"Our situation isn’t as bad as it was last year, but we’re going to have some heavy lifting without that (FMAP money) and with whatever the state is going to do to us," Monroe said.

In Washington County, FMAP provided $1.8 million this year, and like most states and counties, was leaning on a portion of the money for next year.

"We’re praying for it," said Washington County Administrator Kevin Hayes. "It’s a big hole to go back from if it’s not extended."

Saratoga County hoped to receive $2 million next year under the six-month extension, county Administrator David Wickerham said.

"We all know it’s going to end eventually," he said. "Everyone is going to have to start structuring their budgets so they don’t rely on it."

He questioned why New York’s federal Medicaid reimbursement rate is normally 50 percent, while other states normally receive up to 67 percent, FMAP notwithstanding.

Hayes said the extension was initially included in a federal bill that extended unemployment benefits, but was pulled out before the bill passed.

"Everyone thought the extension was going to pass," Hayes said.

On Thursday, Gov. David Paterson called on the federal government to pass the FMAP extension bill before the House of Representatives leaves for its August recess.

The state expected $2.2 billion next year from FMAP, with another $800 million to go to counties in the state, according to Paterson’s office. Paterson said the state Legislature needs to come up with a contingency plan to deal with the possibility the funding will not be coming.

An Open Letter from ADAPT to the Disability Community on the 20th Anniversary of the Signing of the Americans with Disabilities Act

Sisters and Brothers in the Disability Community: As the 20th anniversary of the signing of the Americans with Disabilities Act draws near, we approach the milestone with mixed emotions.

Securing national civil rights legislation, protecting the rights of people with disabilities, was truly historic. It is important that we recognize the incredible nature of this accomplishment and the hard work of those that made this happen, but 20 years after President George H. W. Bush signed this civil rights legislation into law and as our community is preparing for the celebrations, we pause in disappointment that the promise of freedom has still not reached our sisters and brothers in nursing facilities and other institutions.

Our sisters and brothers remain locked away, unseen and unheard. For them, the act is just words on paper. They are not given the opportunity to exercise their civil rights under this law because they still do not have the basic freedoms that other Americans enjoy.

As the Anniversary date draws closer, they may hear about the progress our community has made over the past 20 years, but knowing that you are protected against discrimination in employment means nothing when the hub of your life is a bedroom you share with a stranger. Knowing that buildings and public accommodations are accessible means nothing when the facility staff won't let you leave; and even having access to lifts on buses - as dear to our hearts as that is - means nothing when you cannot afford to go anywhere on the allowance that is left over after the institution has taken its share of your money.

When we gather together as a community, we must remember that our sisters and brothers in institutions will not be toasting those that authored or advocated for the Act. They will not be celebrating independent living, either as a movement or personal achievement, and they certainly won't share in the power or pride of the disability community. For them, July 26th will be the same as every other day in the institution.

Recently, ADAPT has been criticized by some of the provider-based advocates in our community because we are publicly demanding that Speaker Pelosi sign onto the Community Choice Act and agree to eliminate the institutional bias once and for all. They tell us that publicly questioning "our friends" is inappropriate. We are told we should be grateful for the efforts that have been made so far, and that we must be patient because change takes time.

We will not apologize for our impatience. We do this because our brothers and sisters have waited long enough for their freedom. We cannot sit by, patiently and quietly waiting for our government to give our people the freedom which should be our birthright.

We had great hopes for President Obama and this Congress. Many of us believed that his promise for change included the promise of freedom. When President Obama was taking the oath of office with his hand on Lincoln's bible, it seemed like fate was telling us that he would free our people.

When the President and Congress took up health care reform, we were sure that they would finally eliminate the institutional bias, and we hoped that this historic anniversary in the disability community would be celebrated with historic change. Unfortunately, the President and Congress did not have the political will to make this happen. While we recognize that some gains were made, unlike any other class of Americans, our freedom remains a state option.

It is, indeed, true that one of the tools we are using to help people leave institutions and move into the community is the Supreme Court's Olmstead decision, which is based on the requirements of the ADA, and it is true that President Obama's administration has demonstrated an unprecedented commitment to enforcing the Olmstead decision. But such efforts are transitory.

We have seen, during the last 20 years, that new administrations have their own priorities, and although there may now be a commitment to enforce the Olmstead decision, the pendulum will ultimately swing back in the other direction. We also know that the gains we may make in the courts are hard-fought, slow, and constantly subject to attack.

Even right now, as many in the disability community commemorate the ADA's anniversary, the Attorney General in Connecticut is coordinating legal efforts by the states to fight against some of the recent gains we have made in court which will allow more of our people to live in freedom. Ironically, the deadline for states to join the effort is just one day after the anniversary, July 27th.

In America, freedom shouldn't ever be optional, but - in fact - for us it is. While federal Medicaid rules require states to pay for institutional placement, community-based alternatives are state options and continually subject to elimination in state budget cuts. It is ironic that as we celebrate a civil rights victory that is 20 years old, our freedom is becoming even more precarious and the situation becoming more dire. States, facing record budget shortfalls, are cutting the services that support community living options for seniors and persons with disabilities. These budget cuts force people into unwanted placement, stealing from them much of what is most precious: their homes, their families and their freedom.

Some people have moved across the country to a different state to get supports and services to live outside of the institution. There, they have been able to share in the promise of the ADA, but many people don't know about the services available in other states or simply might not be able to make the journey on this modern underground railroad.

But as long as community services are only an option, those who have escaped to freedom cannot escape the fear. No place is safe because their freedom can easily disappear at the whim of state policy makers. They will be called upon to help solve their state's budget crisis by sacrificing their freedom, home and lives.

We all need to recognize that through personal circumstance or state policy change any of us can lose our freedom. No one in our community is exempt. No one is safe. No one in our community can afford to be comfortable, but it is also our hope that - from this discomfort - the disability community will be mobilized to take action and, together, we will build on a 20-year legacy to address this injustice.

Our movement isn't about the civil rights for some of us; it is about the freedom of all of us. We cannot wait any longer. ADAPT asks you, during this ADA 20th anniversary celebration, to recommit your energy to ending the institutional bias during the next Congress. The time is now to end the institutional bias and FREE OUR PEOPLE!

Sincerely, The ADAPT Community

New York Times Covers Cuts to Home Services

July 16, 2010

Cuts in Home Care Put Elderly and Disabled at Risk


HILLSBORO, Ore. — As states face severe budget shortfalls, many have cut home-care services for the elderly or the disabled, programs that have been shown to save states money in the long run because they keep people out of nursing homes.

Since the start of the recession, at least 25 states and the District of Columbia have curtailed programs that include meal deliveries, housekeeping aid and assistance for family caregivers, according to the Center on Budget and Policy Priorities, a research organization. That threatens to reverse a long-term trend of enabling people to stay in their homes longer.

For Afton England, who lives in a trailer home here, the news came in a letter last week: Oregon, facing a $577 million deficit, was cutting home aides to more than 4,500 low-income residents, including her. Ms. England, 65, has diabetes, spinal stenosis, degenerative disc disease, arthritis and other health problems that prevent her from walking or standing for more than a few minutes at a time.

Through a state program, she has received 45 hours of assistance a month to help her bathe, prepare meals, clean her house and shop. The program had helped make Oregon a model for helping older and disabled people remain in their homes.

But state legislators say home care is a service the state can no longer afford. Cuts affecting an additional 10,500 people are scheduled for Oct. 1.

For more, see: