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National Disability Rights Network

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Baltimore, MD - June 7, 2011

Hello everyone and thank you, Colleen (Miller, Executive Director of the Virginia Office of Protection and Advocacy, VOPA), for that gracious introduction.

I also want to thank Curt (Decker, Executive Director of the National Disability Rights Network, NDRN) for the opportunity to be here today.

And I want to thank all the advocates for the incredible work you do.

Every day, you fight for a fairer America. People with disabilities turn to you because they have experienced abuse or neglect or discrimination. And they know they can count on you to do whatever it takes to protect their dignity and ensure they have the opportunities that all Americans deserve.

You don’t do this for a big salary or a nice office. You do it because you believe America should honor the civil and human rights of every person. This is why I consider the investment our department makes in your work to be absolutely critical.

And in April, the Supreme Court agreed, affirming how important your advocacy is.

For many of you, this work is the cause of your life. And many of you were there two decades ago, when our nation took a major step forward in ensuring equal rights for all by enacting the Americans with Disabilities Act.

The ADA broke down barriers in public buildings and the workplace, schools and shopping malls, telecommunications and public transportation. But there was one key form of discrimination that it left standing: discrimination in the health insurance market.

This was not an oversight. Many at that time argued that access to affordable health care was just as important, if not more important, than access to jobs or public spaces.

But ultimately, ending health insurance discrimination was left for another day.

So when President Obama signed the Affordable Care Act into law last year, we not only achieved a health care goal that we had been seeking for years. We also helped fulfill the promise of the Americans with Disabilities Act twenty years after it was passed.

Thanks to the Affordable Care Act, the days of insurance companies deciding who gets coverage and who doesn’t are coming to an end. It is now illegal for insurance companies to deny coverage to children based on their medical condition or disability. In 2014, this protection will apply to people of all ages.

To help people until then, we’ve worked with states to create Pre-existing Condition Insurance Plans. These plans offer immediate relief to Americans with disabilities who don’t qualify for Medicaid or Medicare. And starting next month, we’re lowering premiums for these plans by up to 40 percent in some states. We’re making it easier to enroll too. Starting in July, all you will need to enroll is a physician’s letter dated within the past 12 months, stating that you have had a medical condition, disability or illness.

These plans are a great option for Americans with disabilities who have been locked out of the health insurance market. But we need your help making sure the people who can benefit from them know about them.

There are also some other key reforms that all Americans with disabilities should know about.

Thanks to the new Patient’s Bill of Rights that took effect last year, insurers are no longer allowed to set lifetime limits on coverage that could leave people with disabilities without the care they need when they need it most. We’re also phasing out annual limits on coverage.

At the same time, young adults with disabilities have more security and stability now that they can stay on their parent’s insurance plans until age 26.

There are also new grants from the Substance Abuse and Mental Health Services Administration that will help integrate primary care and behavioral health services so that Americans, including people with disabilities, have to make fewer stops to get the care they need.

And perhaps most important of all, we will expand Medicaid in 2014, which will provide another insurance choice for many Americans with disabilities who may not qualify for coverage now.

What these reforms mean together is that starting in 2014, we will live in an America where every person with a disability will have access to affordable health insurance that meets their needs.

But we also know that having health insurance is no guarantee that Americans with disabilities will receive the long-term services and supports they often depend on.

Over the last few decades, advances in medicine have allowed Americans to live longer and more independently with conditions that might have been fatal or debilitating in the past. But we haven’t updated our policies to reflect this fact or the fact that many people prefer to live in their community rather than an institutional setting.

So that’s what we’re trying to do, starting with programs that have already proven to be successful.

Over the last few years, the Money Follows the Person program in Medicaid has helped more than 12,000 people transition from an institutional setting to their community where they often report greater satisfaction. This is a program that has been shown to save states money while protecting people’s fundamental right to live and participate in their communities. So we are making it available to more people by extending it with a $2.25 billion investment.

At the same time, we are working to make sure that home and community-based services are available on par with institutional services, allowing people to stay in their homes instead of going into a nursing home. For example, the Community First Choice option, which many of you fought for, will give people greater access to personal attendant services and more opportunity to direct the services that best meet their needs.

We also know that there are states that have struggled to address the problem of unjustified institutionalization. That’s why we have the Balancing Incentives Payments Program, which will provide special help to states that have lagged behind in living up to their Olmstead obligations.

Finally, as you know, the health care law called for the creation of a Community Living Assistance Services and Supports program to address Americans' long-term care needs and help them remain as independent as possible, for as long as possible. We are doing everything in our power to ensure that Americans have the choice of a financially sustainable CLASS program.

When you add up all of these reforms, the Affordable Care Act is the most comprehensive civil rights law for people with disabilities since the Americans with Disabilities Act. It reflects our deep commitment to working toward the day when all Americans who want to live in their community have the freedom to do so.

This is a commitment that extends across the Obama Administration.

On the 10th anniversary of the Olmstead decision, President Obama kicked off the Year of Community Living, which has since grown into the Community Living Initiative. It’s brought together leaders from across the federal government to work together to find innovative ways to advance the right to live in the community.

For example, this past January, HUD Secretary Shaun Donovan and I announced that we would join forces to help nearly 1,000 non-elderly Americans with disabilities leave nursing homes or other institutions and live independently. By bringing together state Medicaid agencies with local human service organizations and public housing authorities, this partnership will make sure that people get the housing and long-term services and supports they need to make a transition back to their communities.

This past Friday, a woman right here in Baltimore moved out of her nursing home into a home of her own with the help of a HUD voucher under this new partnership. Sonia is in her early twenties and a mother of young children. Two years ago, she was crossing the street when a car hit her, killed one of her children and put her in a coma for five months. She is now dependent on a wheelchair and the left side of her body is impaired.

In the past, she would have had to remain at the nursing home for her care, separated from her children and denied the ability to raise her family. Now, she can support her family, go to job training, play with her children, and be a part of her community.

In motivating herself to apply for the voucher, she said, “I want to get back to being me.”

The reforms contained in last year’s health care law have given us an unprecedented opportunity to make even more of these dreams of freedom and independence come true.

But we need your help to make sure the full benefits of the law reach the people you serve.

You should be asking your state officials: Does our state’s Medicaid expansion strategy include a plan to enroll people with all kinds of disabilities? Is our state effectively assessing the need for substance abuse and mental health treatment? Are we setting up support options that will help people with disabilities not just move into the community, but also to be fully participating members of the community?

With your help, these reforms Affordable Care Act can be incredible tools for improving the lives of Americans with disabilities.

But we’ve recently heard about a very different plan to re-shape health care in America. The House Republican plan is to turn Medicaid into a block grant and cut spending by $770 billion. Under their own numbers, by 2030, that would cut projected Medicaid spending in half.

The fact is that two-thirds of Medicaid spending goes to older people in nursing homes and families who have someone with serious disabilities. There’s no way to cut Medicaid spending in half without also significantly cutting benefits for all the Americans with disabilities who depend on Medicaid.

That would be unconscionable. And as this national conversation continues, it’s never been more important that we hear your voices.

The health care law and other steps we’ve taken over the last two years are helping countless Americans with disabilities get the health care and services that they need. But we will need your help to make sure these policies are implemented correctly, that they reach the right people, and that we continue to take the necessary steps to ensure that people with disabilities have the same rights and opportunities as all Americans.

We have a long way to go to make that happen, but we are headed in the right direction.

Thank you.