NCIL President Kelly Buckland Gives Opening Remarks at 2006 NCIL Conference

Welcome to the 2006 NCIL Annual Conference. The theme of our conference is “Ending the Institutional Bias.” Ending the Institutional Bias is and has been a priority for us at NCIL and the entire Independent Living movement.

Medicaid funding that favors institutional long-term care for seniors and persons with disabilities over home and community based services is an injustice? An injustice that all of you out there have been working long and hard to correct.

In the words of Eile Wiesel “ We must always take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormenter, never the tormented.

Centers for Independent Living have been pioneers in nursing home transition -- which is literally the nuts and bolts work of how we “free our people.” We all look forward to the day when no one remains in a nursing home or other institution who wishes to live in their own home. So how do we reach that goal? To answer that question, we should first take look at the progress we have made and the setbacks we have encountered during the last year, identify the challenges that we still face in ending the institutional bias and explore the upcoming opportunities that we have to make a difference.

So what have we accomplished in the past year in ending the institutional bias? The passage of the Deficit Reduction Act (DRA) in early February was a bittersweet landmark – both heralding great opportunities and signaling formidable challenges in the years to come.

We have made unprecedented strides in our efforts to end the institutional bias! When we met in July of last year, prospects for expanded home and community-based services were grim in the face of incredible pressure to cut Medicaid. Who would have thought that less than a year later we would gather here, having passed national Money Follows the Person legislation to the tune of $1.75 billion in funding for transitioning people with disabilities from institutions to community settings over the next five years? MFP did not come without a cost. But we did it!

MFP started in 2001 as an innovative experiment in Texas –- Rider 37 – an amendment to the state appropriations bill – to transition individuals from institutions to community settings. It spread to other states, such as Kansas, Vermont, Utah. Then in 2003, it was offered as a bipartisan amendment by Republican Senator Gordon Smith of Oregon and our good friend Democratic Senator Tom Harkin of Iowa. Later that year it was offered as a standalone bill by the same Senators and included in the Bush Administration’s New Freedom Initiative Demonstrations Projects draft legislation.

In 2004 our big victory was convincing Senate Finance Committee Chairman Charles Grassley to hold a hearing on MiCASSA and MFP. Many of you came here to DC for that hearing in a demonstration of our support. Last year, we faced grim budget cuts with Congress calling for billions of dollars in Medicaid cuts. But we persevered. Thanks to an amendment offered by Senators Smith and Bingaman, and support from the Centers for Medicaid and Medicare Services, under the leadership of Dr. Mark McClellan, Chairman Grassley made sure that MFP was included in the Senate Budget Reconciliation package. After many months of determined advocacy efforts, Congress passed a modified version of Money Follows the Person, as a part of the DRA. Although the final version was not as strong as we had hoped since it contains somewhat watered-down incentives, it was still funded at the $1.75 billion level that we sought!

This $1.75 billion will fund competitive grants, lasting a minimum of two years in a number of states. For those states that participate, the federal government will pay an enhanced share (between 75 and 90 percent) of first-year Medicaid costs for individuals transitioning from a nursing home or institution to the community.

CMS is expected to issue a Request for Proposals late this year so that program implementation can begin on January 1, 2007. The Congressional Budget Office (CBO) estimates that 100,000 people with disabilities will benefit from the program in years to come! Given the current legislative environment, this is a remarkable accomplishment and it would not have happened without the efforts of many of you in this room today!

You will need to remain active. As implementation of Money Follows gets under way over the coming months we need to weigh in with CMS on program design and with our individual states, persuading them to apply for the grants. Then, beginning on Jan 1, 2007, we will have to stay vigilant to ensure that the states are fulfilling their obligations and that CMS is engaging in rigorous oversight. This responsibility will require considerable time and effort, but as a community this is a challenge that we are and must be prepared to take on.

In addition to the passage of MFP on the federal level, a great amount of work has been happening in individual states. Our brothers and sisters in New Mexico were the latest to pass MFP at the state level! Governor Bill Richardson, who is widely viewed as a Presidential contender, was undecided until the last moment as to whether he would sign or veto the bill. Richardson cited the passionate grassroots advocacy from the disability community as the deciding factor that convinced him to approve Money Follows.

In Wisconsin, advocates scored a huge victory with the successful adoption of legislation taking the state’s FamilyCare program statewide and eliminating waiting lists for home and community based services within five years. FamilyCare creates an entitlement for individuals to long-term services and supports in the setting of their choice. In his statement announcing this legislative success, Wisconsin Governor Jim Doyle set a goal of reducing nursing home utilization by 25% in eight years!

In my home state of Idaho we passed Medicaid buy in legislation without a single legislator voting no and the legislation was signed into law by Governor Kempthorne!

In Kansas they passed rate increases in HCBS and got an additional Half Million dollars in IL Funding.

A clear trend is emerging and states have been put on notice that people with disabilities want to live, work and raise their families in neighborhoods just like everyone else!!!

In addition to MFP, the Deficit Reduction Act contained – Section 6086, which allows states to include Home and Community-Based Services as a State Plan Option. We need to monitor this very carefully, since it could either be very good or very bad – depending on how it is implemented.

Under this provision, as of January 2007, states will be permitted to provide a package of community-based services under their state Medicaid plans – without having to obtain a home-and-community based services (HCBS) waiver. States will be free to offer the full range of HCBS waiver services to seniors and people with disabilities up to 150% of the poverty level. A positive precedent is that states that adopt the state plan option will be required to establish needs-based criteria for institutions that are more rigorous than those for community services. Individuals who do not meet the institutional level can be served in the community under the state plan option. There is also no budget neutrality requirement. States can also give people the ability to direct their own services.

Although much of Section 6086 may sound great, unfortunately there could be problems. NCIL vigorously opposed Section 6086, because Congress also inserted some provisions that we are concerned may have serious consequences for our efforts to end the institutional bias. This provision sets a new and potentially dangerous precedent in Medicaid law by permitting states that offer HCBS under the state plan option to set enrollment caps, maintain waiting lists and waive the requirement that services be provided statewide.

We are concerned that caps and waiting lists being formalized in statute will have a negative on our ability to hold states accountable for making progress in implementing the ADA’s integration mandate and Olmstead decision. There are real concerns that the enrollment caps may undermine services under existing forms of optional coverage. The end result would be to impose caps and/or institute waiting lists where they were previously not permitted to do so. CMS announced that they will be issuing draft regulations later this year. The regulations will impact how restrictive or broadly the law is interpreted at the state level. You should all plan to submit comments when draft regulations are issued. You also should find out what plans your state has in adopting a state plan option. If your state intends to adopt a state plan option, you should call for oversight by the legislature and consumer groups such as CILs.

The DRA also provides for Home and Community Based Alternatives to Psychiatric Residential Treatment for Children and authorizes the Secretary of HHS to award one-year grants to up to 10 states to offer home and community based waiver services to children with serious emotional disturbances under the age of 21 as an alternative to residential psychiatric treatment facilities. These grants will operate like home and community based waivers. Selected states would also get additional resources for providing mental health services to young people in the community. However, relatively few children will access this benefit and the one-year duration is so short that it will be difficult to evaluate if the program really is effective.

The Deficit Reduction Act also may mean that Medicaid recipients with disabilities may face substantially higher cost-sharing. This additional cost-sharing, will be charged to individuals living in the community, but not those living in institutions Which only furthers the institutional bias. Governors are also getting significant and, in our view, too much discretion for flexibility in benefit package design. Last December, we warned Congress that the cost sharing, benefits package flexibility and enforcement provisions have the potential to dramatically exacerbate the institutional bias. It is morally wrong to derive savings by deterring people from obtaining medically necessary care. We must be vigilant at the state level to ensure that the states do not abuse their new power and make an end run around the Olmstead by imposing unaffordable cost-sharing on persons with disabilities living in the community!

So what is the outlook for the future? At the present time there are amazing possibilities, but also daunting challenges and major risks. So where do we go from here? Obviously we want to pass MiCASSA. On Wednesday, I want all of you to urge your Representatives and Senators to act immediately to become co-sponsors of MiCASSA! The Senate shouldn’t be wasting its time taking up amendments next month to stop a non-existent flag-burning epidemic – and they sure as heck should not be considering the nomination of anti-ADA judges like Terrence Boyle – while there are still hundreds of thousands of people with disabilities trapped in nursing homes yearning to live in the community!

We also need to push and push hard for the passage of the Senate version of the WIA/ Rehabilitation Act – in order to create a 5th Core Service of “Access to Community Life,” which includes transition from institutions. Why is this so important? Because this has the potential to strengthen our movement and make a real difference in remedying the institutional bias. A number of CILs are already working on youth transition, which is about preventing kids with disabilities from winding up in institutions and creating opportunities for them to realize their full potential. And many CILs are also dedicating a great deal of resources and effort to nursing home transition. Adding the fifth core service will formalize this role – as our role BY LAW – giving us increased clout both here in Washington and at home in your state capitols when issues around Medicaid and opportunities for young people with disabilities are at stake. Some people question why we’re pushing so hard for a fifth core service without any guarantee of added resources. But I take a different view. Many of us are ALREADY offering these services. So, if we demonstrate results with our formal role spelled out in law, we are confident that we will be able to leverage that to generate increased private and public funding. As I see it, this is a win-win proposition!

In order to end the institutional bias for once and for all, we need to devote considerable effort to a priority that you, the NCIL membership, have identified as our top concern – housing. No matter how successful we are in promoting home-and-community based services, our efforts will fall flat unless we succeed at the local, state and federal levels in promoting investment in accessible, affordable housing. Unfortunately, HUD is in denial – pretending that there is no need for dramatically increased investment in accessible, affordable housing. ADAPT recently met with Secretary Jackson to promote an initiative called Access Across America to persuade HUD to support the creation of new Section 8 vouchers designated for use of individuals transitioning out of nursing homes. We strongly support that effort and will lend our voices to that cause!

There is simply not enough accessible, affordable housing stock – and we need to get all levels of government committed to doing something about it. We need to pass Inclusive Home Design, in the form of ordinances at the local level, and as law at the state and federal levels. Our brothers and sisters in Colorado led the way when they persuaded their state legislature to adopt Inclusive Home Design. Unfortunately, Governor Bill Owens vetoed it – but that makes it a political issue that can be brought up as Colorado elects a new Governor this year. At the federal level, the cosponsor list for HR 1441 – the Inclusive Home Design Act – demonstrates that there is growing bipartisan support for the concept. We know that the Home Builders will complain incessantly that there’s no market for visitable or accessible housing, and will appeal to legislators who oppose mandates on big business. To those naysayers, we have this answer: paraphrasing the famous line in the Field of Dreams, “If you build it, we will come!!!” Common sense dictates that sometimes you need to pass legislation to achieve necessary change when the market isn’t working. This is precisely what we intend to do!

There’s more to be done to solve the issue of housing supply. We need to pass affordable housing trust funds at the state and federal levels. And we need to get involved at the local level with the development of consolidated plans, which allocate how billions of dollars in Community Development Block Grant (CDBG) money are spent. Some of that money can be spent on making municipal infrastructures more accessible, and other money can be spent on home accessibility modification programs and accessible/ affordable housing registries. CDBG has statutory requirements for community participation in the development of these plans and we need to make certain that local planners understand that when we say “nothing about us without us,” we really mean it!

In conclusion, even though there are still challenges that we face on a national, state and local level. We are winning and will continue to win this war. Although we are winning, we all are here because we know that despite all the improvements, the situation remains unacceptable. We have lots of work to do. As Justin Dart would say, it is time for us to “Lead On” in “the revolution of individualized empowerment.” We haven’t a moment to lose. Thank you for being here and for the important leadership role you play in freeing our people.