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IL Guest Blog: The Manifest Destiny of Independent Living

Marc Gold

August 29, 2014

“Manifest Destiny” has always been used to describe the inevitability that the United States would inhabit the North American continent, from the Atlantic to the Pacific Ocean. I think “Manifest Destiny” also applies to the inevitability that individuals with disabilities will have a choice on where they live, the type of services they require to be independent, and their involvement in hiring their own providers of service.

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National Long Term Care Policy

Beginning in 1965 with the creation of Medicaid, the only care option for an individual with a disability was the nursing facility for long-term services and supports (LTSS). The phrase "long-term care" in fact emphasized a medical model, rather than individual decision-making. However, there was a persistent and growing demand for programs and systems that enabled individual choice. The Omnibus Budget Reconciliation Act (OBRA) of 1981 fundamentally changed the institutional bias by creating the first real opportunity for comprehensive community-based services – the waiver program.

Over the next twenty-five years, states, especially Texas, developed a patchwork of waiver programs serving individuals with physical disabilities, intellectual and developmental disabilities (IDD) as well as children with serious emotional disturbances. However, waiver programs were always limited by legislative appropriations and not everyone could be served in the community. Many had to be placed on an interest/ waiting list. Additionally, the waiver programs were developed to be specific to particular population/ diagnosis and had no real linkages among each other.

One of the most significant and historical moments in the “Manifest Destiny” of LTSS came with the United States Supreme Court ruling of Olmstead v. L.C. (June 1999). Briefly, Olmstead requires states to serve individuals with disabilities in the residential setting of their choice including the community. This provided the impetus that the disability community and its supporters needed to finally require states to serve individuals with disabilities in the community.

Progress and Challenges in Texas

Texas was and is a champion with regards to Olmstead or, as we call it in our state, the Promoting Independence Initiative (P.I.). The first decade of the 2000s witnessed a dramatic increase in the number of individuals with disabilities being served in the community after the creation of several supportive programs and services. Some of these include: Money Follows the Person (MFP), Consumer-Directed Services (CDS), housing programs, Aging and Disability Resource Centers (ADRCs), and increased legislative appropriations.

As the 2010s progress, Texas continues to make strides with P.I.. However, we have yet to truly realize “Manifest Destiny” for individuals with disabilities because of new and ongoing challenges:

• There still remain tens of thousands of individuals on interest/ waiting lists.
• Affordable, accessible, and integrated housing remains a significant barrier to successful community living.
• There is a persistent lack of tenured, trained direct services workers because reimbursement wages hover around minimum wage.
• Accessible and available transportation does not meet demand.
• Increased longevity for all populations results in a dramatically growing demographic of individuals with disabilities.
• The necessary funding to create a sustainable Medicaid LTSS system creates never-ending financial pressures on state government.
• Full integration of technology has yet to be realized.
• Providers (and decision makers) must recognize the impact of behavioral health issues in addressing an individual's needs, especially when those needs are complex.

And then there is managed care! Texas, along with many other states, is in the process of changing its service delivery model from fee-for-service to managed care. Managed care results in many positive outcomes:

• better integration and coordination between acute and LTSS
• valued-added services
• immediate access to community services for individuals with physical disabilities who are meet Social Security of Income standards

However, as it expands and evolves, the disability community and their friends must be attentive to these issues to ensure an effective managed care system:

• access
• true service coordination
• quality of services
• ability to use the CDS option
• availability of direct service workers
• adequate provider networks
• meeting the needs of individuals with choice, dignity, and independence

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The Manifest Destiny of the Independent Living philosophy can be realized. The upcoming legislative session will be difficult, but we have dealt with difficult sessions before. We must always remember and continue to strive for the ultimate goal of equal civil rights for all individuals. As Martin Luther King Jr. said, “The arc of the moral universe is long, but it bends towards justice.”

About Marc

Marc Gold is currently a Senior Consultant with Sellers Dorsey and leads projects involving long-term services and supports including managed long-term services and supports. With nearly three decades of experience in directing long term services and supports policy, Marc was most recently an executive with the Texas Department of Aging and Disability Services as the special advisor on policy and lead Texas’s Olmstead efforts. There, he was responsible for interagency policy involving all of the Texas health and human services agencies for Texas’s Promoting Independence Initiative, the Money Follows the Person Demonstration, and the Balancing Incentive Program.