Remarks by Carol Novak,
Member,
National Council on Disability,
before the
Association of People for Rural Independent Living

October 12, 2003

Good morning. My name is Carol Novak. I am a Board Member on the National Council on Disability (NCD). I am also the parent of a remarkable young man who is currently trying to establish his own vision for independence and community living.

I thank the people of APRIL for inviting me to your conference to share the results of work that the National Council on Disability (NCD) has published called Olmstead: Reclaiming Institutionalized Lives.

The National Council on Disability (NCD) is an independent federal agency making recommendations to the President and Congress on issues affecting 54 million Americans with disabilities. It is composed of 15 members appointed by the President and confirmed by the U.S. Senate. NCD is charged by Congress with monitoring federal statutes and programs pertaining to people with disabilities, and assessing their effectiveness in meeting their needs. As part of its mission, NCD provides a voice in the Federal Government and to Congress for all people with disabilities in the development of policies and delivery of programs that affect their lives.

NCD provides leadership in the disability policy arena by building on its traditions of innovation, objectivity, independence, and by transcending disciplinary boundaries to meet the changing needs of society. Influencing the Federal Government's policy process is increasingly important to NCD in the work that it undertakes and the range of arenas in which it operates. Many NCD project and program activities reflect the expectation that the work it undertakes and supports will influence or have a positive impact on the policy process, and ultimately improve the quality of life and outcomes for Americans with disabilities.

What an impressive array of experience has gathered here! I approach my task with you today with humility, respectful of the wisdom you bring from so many places.

In discussing the results of NCD's Olmstead research, we will touch on issues of federal policy, state implementation, service/support provision, advocacy, and research.

The common threads we share

What do we share about issues of independence and community living? What brings us to this conversation and this place?

First, it is the caring - each of us simply cares deeply for others. Caring starts with the commitment, the feeling, the vision.

I, and you, bring to this conversation my, and your, particular passion for independence. It is an open, dynamic exchange of ideas. A place where lives, livelihoods, environment, culture, and governance meet; a place where community, services, policy, and professional narratives come together. Things happen in conversations and places like this.

But I have not come here dragging my passion behind me. It lives through me. I live through my passion by giving it meaning as I go about my daily life.

If my passion is unique, then so, too, is my vision for my family. I create it with my husband and my son (and colleagues) as I go about living my life and our lives. I share my commitment and vision in places, and at times, such as this. I suspect this also what brings each of you here - we are proud of what we do, we want to tell others about it, and we want to learn about what others are doing.

I find it affirming to be with others who are committed to the vision of independence for people in rural America with a diversity of community living needs. The vision you work for is coming increasingly closer to inhabiting a central place in policy, planning, management, and practice. Your issues are no longer on the fringes geographically, politically, administratively, or theoretically.

Creating/Living Our Family's Vision for Independence and Community Living

My story today tells of my family experiences creating a vision of independence and community living with my wonderful son, Jonathan. There is much is happening in his life and our lives now. Jonathan is a 27-year old man who lives with severe cerebral palsy. For 15 years, I was a single mom and Jonathan is my only child. We lived in Atlanta from the time he was 5 until he was 25. He pioneered inclusion in the Cobb County School System when he left a self-contained special ed class at age 15 to attend all regular classes in his neighborhood school. His experience was a positive one, both for him and for his classmates. He made friends for the first time in his life - friends who came home with him after school, friends who played basketball with him, friends who took him to after school activities, friends who helped him with everything from homework and using the bathroom. Those 6 years were the happiest in his life - because he was a full member of his community and viewed as an equal by his peers. Then, when he and his friends graduated - they went away to college and careers and Jonathan was left behind. I worked fulltime and was truly worried about how we would manage when he no longer attended school. Fortunately, he was able to get a slot on Georgia's Independent Care Waiver for adults age 21 and over with physical disabilities. However, his life was not always meaningful for him and he spent too many days at home watching TV with inferior personal attendants.

In 2001, we moved to Florida because I remarried. We took a big risk because he lost all of his Medicaid HCB services when we left Georgia. For the first year we lived in Florida I was his full time caregiver. Fortunately, and due to our vigorous lobbying of our legislators, congressman, and governor, he was accepted into the Developmental Disabilities Waiver Program and now has good personal assistant services. He is planning to move into his own home within the year and is preparing for employment by volunteering at the Florida Aquarium and our church. His goals are the same as any other 27 year old man - to get married and have a job and family of his own. My role is to support him in achieving his goals and to advocate for the support services he requires. Just this week we had an appointment with our congressman's staff to ask for his assistance in examining a new evaluation tool his Medicaid waiver has implemented that we feel is ambiguous, deceptive and incomplete. Living a meaningful life in the community is a perpetual challenge for people with disabilities - and Jonathan is no exception.

NCD's "Reclaiming Institutionalized Lives"

The extent of unnecessary institutionalization of people with disabilities in this nation is daunting. Research and experience have shown that the great majority of people who live in large congregate settings could be supported safely, effectively, and enjoy a higher quality of life in a typical home in the community. Longitudinal studies of community placement document their more favorable outcomes and further, establish that persons with significant disabilities benefit the most from community placement.

Similarly, comparison of nursing facility residents with elders, children with complex health needs and adults with physical disabilities living at home show that nursing facility residents are not more severely disabled than those who receive support in their own homes. Yet, 106,000 persons with developmental disabilities lived in public and private institutions and more than 1,300,000 elders and persons with disabilities lived in nursing facilities in the year 2000.

In addition, data on the outcomes of consumer-directed mental health services and intensive case management models show that most of the 58,000 persons currently confined in psychiatric institutions could be supported in their own homes in the community. The persons who fill the more than 800,000 licensed board and care beds in the United States could also live in the community.

The Olmstead Decision

In 1999, by a clear majority, the United States Supreme Court held in Olmstead v. L.C., that under the Americans with Disabilities Act (ADA) undue institutionalization qualifies as discrimination by reason of disability, and that a person with a disability is "qualified" for community living when the State's treatment professionals have determined that community placement is appropriate, the transfer from institutional care to a less restrictive setting is not opposed by the individual, and the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with disabilities.

Justice Ginsburg added that demonstrating that a State has "a comprehensive, effectively working plan for placing qualified persons with mental disabilities in less restrictive settings" is one method a state may use to show that it already has reasonably modified its programs and that no further alteration is necessary. This statement became the basis for the Olmstead planning initiatives.

Barriers to Community Integration in the United States

In its study, NCD heard from representatives of all disability groups who agreed that lack of affordable and accessible housing is the single biggest barrier to community integration in the United States. Persons with disabilities whose incomes depend on government benefits need housing subsidies or shared housing to live in the community.

Unfortunately, because of systemic barriers, people with disabilities tend not to receive their fair share of the approximately $7 billion in federal housing subsidy programs, and the various Section 8 housing subsidy programs targeted to persons with disabilities are funded at a relatively modest amount ($271 million in 2001) in comparison. An additional barrier is the lack of meaningful collaboration between human services agencies and housing agencies. High unemployment rates for persons with significant disabilities (typically, 60 to 90%) maintain dependence on public benefits.

The institutional bias of the Title XIX (Medicaid) program, in which home and community based waiver-funded services and personal care are optional while nursing facility services are required, and financial eligibility rules for institutional residents are more generous than those for people living in their own homes, greatly compounds the problem. Title XIX waivers have significantly expanded available funding for home and community based services, but have not leveled the playing field; because state governments do not recognize home and community based waiver services as entitlements, waiting lists for waiver services are long in most states.

The unavailability of Title XIX reimbursement for services to adults below the age of 65 in Institutions for Mental Diseases poses a significant barrier to the use of home and community based waivers to fund community mental health services.

And, from other research (National Academy of Sciences, Institute of Medicine's 1998 report on the "Quality of Long-term Care), we know that one of the most important and frequently reported barriers to the expansion of Medicaid waiver services is the shortage of direct care workers, particularly those working in the home. States with large rural populations faced particularly imposing challenges. State officials identified these shortages as being related to the growing competition in the labor market and the low state Medicaid reimbursement rates for Home and Community Based Service providers. Low wages and benefits severely limit the availability of personal assistants and other direct support professionals. In turn, low wages are the result of low reimbursement rates for community services. Lack of quality health care and dependable transportation are also significant barriers.

Delivering on the Promise

On June 18, 2001, President George W. Bush, pursuant to his New Freedom Initiative, issued Executive Order No. 13217, committing the Administration to implement the integration mandate of the ADA as interpreted in Olmstead. The Executive Order required federal agencies to promote community living for persons with disabilities by providing coordinated technical assistance to states, identifying specific barriers in federal law, regulation, policy and practice that impede community participation and enforcing the rights of persons with disabilities. As a result of that Executive Order, federal agencies evaluated their own programs to identify barriers, and issued their final reports on March 25, 2002.

Altogether, these federal agencies' reports acknowledged the many barriers to community integration of persons with disabilities, including the institutional bias of the Medicaid program, unaffordable and inaccessible housing, a critical shortage of personal assistance and direct support professionals and the unavailability of supported employment. However, most of the proposed agency actions consisted of technical assistance, training, research, demonstration, policy review, public awareness campaigns, outreach, enforcement of existing regulations, information dissemination, convening of advisory committees and interagency coordination and collaboration. Systemic solutions, measurable goals, timelines, deliverables and outcomes were lacking.

In early 2003, the Administration announced a five-year program, the "Money Follows the Individual" Rebalancing Demonstration, beginning in FY 2004 to enable people with disabilities to move from institutions to the community. The program would provide 100% federal funding for home and community based waiver services for a person leaving an institution for one year, after which the state would agree to continue to provide services for the person at the regular Medicaid matching rate.

The States' Response

After Olmstead was decided, the Department of Health and Human Services (HHS) provided guidance to the States concerning the development of "comprehensive, effectively working plans" in increasing community placements. In addition, Olmstead stakeholders concluded that State implementation plans could have value both as organizing tool for achieving deinstitutionalization and as a method to persuade States to commit to numerical targets, timelines and allocation of resources.

Although the experiences of States and stakeholders in implementing Olmstead varied widely, NCD's study documents some key overarching findings, including:

• Plans do not consistently provide for opportunities for live in the most integrated setting as people with disabilities define "the most integrated setting."
• The majority of states have not planned to identify or provide community placement to all institutionalized persons who do not oppose community placement.
• Few plans identify systemic barriers to community placement or state action steps to remove them and few plans contain timelines and targets for community placement.
• State budgets often do not reflect Olmstead planning goals.

A Rural Perspective

The Census 2000 reports that the size of the institutionalized population in this country is estimated at about 2 million people in nursing homes, psychiatric hospitals or wards, and in juvenile institutions. In the rural United States, there are about 300,000 people who are considered part of this nation's institutionalized population.

As evidenced in our report's discussion of State Olmstead initiatives and early implementation efforts, there are some basic "rural" issues that are key to the success of Olmstead implementation. These issues include, but are not limited to: (a) accessible public transportation; (b) well-trained and fairly-compensated community services/support staff; (c) available and affordable health care/supports; and (d) local commitment and resources.

On behalf of the nation's 300,000 people who are institutionalized in rural America now, and the others to follow in the future, this NCD report compels us to:

• have as clear an understanding about what our individuals States are/are not doing for Olmstead planning and implementation;
• build upon the progress some States have achieved in Olmstead implementation;
• remove the chronic barriers in our States to further progress in Olmstead implementation;
• vigorously recruit State leaders to build on States' progress and remove persistent barriers; and
• share solutions and successes that are unique to rural America.

Lessons Learned: Good Practice in Community Services and What Works

The following are some of the many examples suggested by NCD's report of promising practices in the design, delivery and financing of community services.

• Good practice in Olmstead planning. Indiana's recent plan assigning each recommendation to one of three categories: those that should be implemented quickly and with little or no fiscal impact or regulatory requirements; those that should be implemented quickly but have a fiscal impact or require regulatory changes; and those that are more complex, costly or difficult and will require more time to develop and implement, should serve as a model for other states. Nevada's Olmstead plan is commendable for its candid analysis of the state's compliance with Olmstead.
• Overcoming incentives to unnecessary institutionalization. Methods include Maine's use of pre-admission screening by an independent agency prior to nursing facility placement, Minnesota's legislation encouraging nursing facility operators to take beds out of service, and Washington's system for tracking reduction targets for nursing facility placements.
• Identification and transition of people with disabilities from institutions. Disability rights advocates from ADAPT are doing the work of identifying people in nursing facilities who could move to more integrated settings in Colorado and Kansas.
• Use of trusts and fine funds to finance transition costs and start-up of community services. A creative and under appreciated set of strategies for financing transition costs, providing "bridge funding" and funding new community services involves the creation of trusts and fine funds dedicated to the needs of people with disabilities. North Carolina and Oregon and Washington have used the proceeds from the sale of state facilities to establish trusts to generate funds for people with disabilities, and other states are considering that approach.
• Housing strategies. Commendably, and due in large part to the influence of the technical assistance provided by HHS' Office of Civil Rights, the more recently-developed plans tend to reflect the input of housing agencies. Provisions for requiring universal design in new units that state housing agencies fund or finance; insuring that all existing publicly financed housing has completed Section 504/ADA self-evaluations; and conducting utilization reviews to ensure that targeted Section 8 programs are fully used; and including home modifications and home repair in the services provided under home and community based waivers and independent living programs are examples of housing-related recommendations in state Olmstead plans.
• Single point of entry systems. Single point-of-entry structures have the potential to reduce unnecessary institutionalization by providing easier access to a wider array of community services. Single point of entry systems that separate assessment and service brokerage from service provision are also responsive to CMS' findings in a number of states that Medicaid beneficiaries' right to choose among qualified providers was violated.
• Beyond Institutional Closure: Increasing Community Integration. Developmental disabilities services in Vermont and New Hampshire show that "the most integrated setting" is more than placement in a residence outside an institution but a continuous process of increasing community inclusion. These states' service systems have progressed far beyond institutional closure and are eliminating group homes and sheltered workshops in favor of living in a companion home or a home of one's home and working at a real job with support.
• Self-determination. Self-determination and consumer-directed service models have been so broadly tested and practiced that they have emerged as fundamental principles in human services. These principles need to be much more widely adopted.

Recommendations

Based on NCD's research, our recommendations for the Federal government include that:

• HHS and its Centers for Medicare and Medicaid Services (CMS) provide more explicit guidance on implementation of Olmstead v. L.C.
• CMS determine whether the states are adequately identifying residents of Medicaid funded and certified facilities that can handle and benefit from community living.
• HHS refocus its Real Choice Systems Change Grant program as a true system-change project by shifting from funding demonstration projects to funding change that affects entire service systems.
• HHS require the states to identify all institutionalized persons in the state and their need for community services.
• CMS use its waiver approval authority to require the states to minimize "institutional bias" in the choice between institutional and home and community-based waiver services.
• HHS provide federal financial assistance to states to provide small grants to people with disabilities for transition costs from institutions to community.

Conclusion

The Olmstead decision has become a powerful tool for a national effort to increase community-based alternatives and eliminating unjustified institutional placements. Ultimately, only comprehensive amendments to Title XIX of the Social Security Act, similar to the amendments proposed in MiCASSA, will overcome the institutional bias within the Medicaid program. In the meantime, however, there are many measures short of a thorough revision of Title XIX that federal agencies can and should undertake. We must continue to empower Olmstead stakeholders in their state systems change activities, that is, efforts to redesign the state service systems to enhance choice, independence, self-determination and community integration. America will be much more prosperous when it makes real the right of people with disabilities to live in the most integrated setting.

Thank you, again, for allowing me to share the results of NCD's Olmstead work. Are there any questions?