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

Excellent Write Up of Community First Choice Option's Value

From www.stateline.org:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Truly,
Deb and Jim