People with disabilities, their families, and advocates view the future with hope. In this vision, people with disabilities live and take part in their communities. They choose how to live their lives. They choose their housing, activities, relationships, finances, and services. The services are tailored to meet their needs and build upon their strengths. Their lives are filled with choice.
It is a vision, not a pipe dream, centered on three core concepts: participatory decision-making (empowerment), integration, and individualized and appropriate services (IAS).
For many, the most important of these three concepts is empowerment. Empowerment can be defined as the right to participate in all decisions that affect a person’s life. Through empowerment, individuals have choices, control, and self-determination. Integration occurs when people with disabilities choose where they want to live. IAS results when people with disabilities are central decision-makers in selecting services.
Research, private programs, and public policy grew in the last decade and help support this vision, creating service systems that respect choice by the person with the disability (consumer). At the same time, advocates and policy-makers have worked to reform a hallmark program serving people with disabilities: Medicaid waivers. These reforms shift the power of choice closer to the person with a disability.
What Does the Law Allow?
The New Freedom Initiative (NFI) and the Independence Plus Initiative (IPI) encourage state programs to include people with disabilities in decisions on how services are provided, which empowers the person.
The IPI allows states to tailor programs under the §1915(c) Home and Community Based Services (HCBS) or the §1115 Demonstration Waiver programs. To qualify for the IPI program, states must allow people with disabilities to help develop their service plans (person-centered planning). States must allow person to help determine how funds are spent (individualized budgets). And, states must allow people access to information and financial support services (self-directed supports), such as support brokers and fiscal intermediaries.
The Demonstration Waiver program allows even more flexibility for participant direction, allowing people to directly receive and manage their funds. This waiver allows people to hire relatives who are legally responsible for their care. It also expands coverage to individuals who may not be eligible for institutional services.
Limitations of Empowerment and Independence Plus
The Independence Plus Initiative (IPI) is the benchmark for providing service models that support self-determination. It is limited, however, in a number of ways. First, the IPI only provides states with options rather than requiring how people must be involved. Whether people with disabilities control Medicaid services is up to each state, and the states do indeed vary in their approach. As a result, the extent of a person’s right to self-directed services depends largely on where they live. To learn what waivers are available in your state and the features of each program, see the Centers for Medicaid and Medicare Services (CMS) webpage at http://www.cms.hhs.gov/medicaid/consumer.asp.
The level of consumer control varies greatly state-by-state since Medicaid reform is complicated by the following factors: Debate among states, agencies, and providers over what constitutes person-centered planning, individual budgeting, support brokering, and other aspects of participant directed services.
- The increasing weight states and CMS are giving to health and safety as the primary goal of Medicaid waivers.
- Increased pressure to contain and reduce costs of Medicaid.
- Providers who wish to retain control of funds and services.
- Confusion over how to help families and people with disabilities who want to control their own services but who do not have the necessary supports.
The purpose of IPI is to foster new, creative programs for participant directed Medicaid services. But at some point, the demonstration period will have to come to an end. The question now, as then, must be: Will rights to basic services that support participant direction become common? If so, true self-determination may not be possible for many people with disabilities unless the law addresses the link between health and safety on the one hand and quality of life on the other.
Integration and the Olmstead Mandate
Integration received a welcome boost in 1999 when the Supreme Court in L.C. v. Olmstead ruled that Title II of the Americans with Disabilities Act (ADA) required states to provide services in the most integrated, appropriate setting. However, the setting must match the needs of each person with a disability. The Court clarified that treatment in the community is preferable to treatment in an institution. It said that states are required to provide community-based treatment if appropriate and not opposed by the person with a disability. Finally, the ruling stated it must be reasonably possible (fiscally and programmatically) for the state to provide community placement.
While not a Medicaid case, Olmstead was a landmark decision. It provided power to people with disabilities to press for consideration as equal members of the community. It also helped inspire the New Freedom Initiative (NFI), the new federal plan for disability services. In 2001 the NFI directed six federal agencies to decide if any programs, procedures, or policies should be changed to make community services more available: Health and Human Services, Justice, Education, Labor, Housing and Urban Development, and Social Security. The NFI also launched the Real Choice Systems Change grant program, which is helping states to implement the Olmstead decision. (For more information on the NFI, see Participant Direction of Budgets: Key Components and Research.)
Limitations of Integration in Medicaid
The integration mandate for Medicaid usually means little more than people can live and receive services outside of an institution. This does not mean that people will easily become meaningful participating members of their community. Olmstead provided people with the choice to live and receive services in the community. Still, it gave states the right to determine a reasonable pace at which such opportunities would be made available. It allowed waiting lists. Furthermore, it did not require or provide support for anything more than placement in the community. The Medicaid statute does not require state programs to measure the level of integration or participation of people with disabilities or their families within the community. It does not require increases in the level of integration or the participation of people with disabilities or their families. According to Medicaid law, if you live in the community, you are integrated. In addition, Medicaid is for medical expenses and not social support. Medicaid services are not required to address any other meaningful domains of community life. Medicaid waivers are required only to allow services to be provided outside the institution. Medicaid waivers do not take into account a larger vision of what community integration actually means.
Individualized and Appropriate Services (IAS) and Medicaid Services
Health and safety services have long been provided, prescribed by physicians and other professionals to address each patient’s needs. Research is beginning to show a link between health and other areas of quality of life, such as social skills and independence. As a result, Medicaid services have started to adopt a more holistic approach to persons with disabilities. Some services, such as the music therapy that Jay Turnbull receives (see Real Story), were traditionally considered non-medical/health services. These services are now funded in some states under Medicaid but they usually require a physician’s order.
Recent efforts have sought to expand services under Medicaid. These efforts include the Medicaid Community-Based Attendant Services and Supports Act of 2005 (MICASSA). The MICASSA bill, introduced in February 2005 by Senator Tom Harkin (D-IA), gives people eligible for institutional placement access to community-based personal assistant services. It also creates a trial project to assess cost sharing and management. Unfortunately, the MICASSA bill has been introduced three previous times and seems to have little chance of passing this year.
Limitations in Medicaid
Congress currently faces budget pressures and looks to cut $10 billion from the Medicaid budget over the next four years. In response, Medicaid and the states have been forced to focus on cost-saving efforts. They may trim services, tighten eligibility, and adhere to rigid definitions for funding. They face the challenge of basing services on what works for each person, not whether services are medical or non-medical, and containing costs.
Because Medicaid is still a welfare-based program, it limits how much money a person may have, discouraging people from improving their financial situation. Moreover, people who manage their finances well can be disqualified completely or experience a reduction in their benefits. Finally, if a service reduces a person’s needs, the person’s funding is reduced. Thus, Medicaid waiver programs arguably maintain poverty and sustain disability. These are hardly the outcomes the law is intended to produce.
True integration will be achieved only when it is tied to improved long-term outcomes for people with disabilities. These outcomes include financial independence, increased functioning or reduced impairment, genuine participation in the community, and self-determination. Without a full commitment to these principles in Medicaid law, waivers provide a way into the community--but (it must be conceded) only as second-class citizens