The Past, Present and Future of Community Living for Persons with Disabilities – A Christmas Carol

The holidays are a time of hope and renewal providing an opportunity to look at past accomplishments, while planning for the future. Many families are trying to figure out how to plan for the future under the limitations of today’s economy. This is a difficult undertaking under normal circumstances. Planning for the future needs of persons with disabilities can be a particularly daunting task, especially when special needs trusts may be needed. Even if we may believe that we can control our future through our present actions, it is very important that a special needs trust be as flexible as possible.

Take, for instance, a fictional example of Tiny Tim, a 17 year-old young man who has autism. Doctors have advised that he will need assistance for the rest of his life and that his likely lifespan is 87 years. With this information, it becomes clear to Tiny Tim’s parents that they will need to prepare to provide for Tiny Tim for approximately 70 more years. This will include health care, living arrangements, education, therapy, recreation, and protection.

How can Tiny Tim’s parents face the challenge of taking care of Tiny Tim for seven decades, especially with the inevitability of their own deaths or potential incapacity? Traditionally, advisors would recommend that the parents create a special needs trust. Be warned, however, that a special needs trust focused only on protecting Tiny Tim’s eligibility for government assistance may not sufficiently meet the challenge. What if government benefit programs, such as SSI and Medicaid, no longer exist in 70 years?

The government may do away with such programs or could introduce alternate programs that operate very differently. This highlights one reason why, in planning for someone like Tiny Tim, it is essential that a comprehensive plan have the flexibility to adjust as the programs and systems that provide for Tiny Tim continue to evolve.

A plan for the next 70 years of Tiny Tim’s life that focuses only on public benefits is not likely to take care of him or enable him to enjoy the quality of life that a parent would wish for him. The solution (and therefore, the challenge) is to create a private social service system that will provide advocacy, comfort and security for the next 70 years, no matter what the future might bring.

To Look Forward We Need to Look Back – The Ghost of Deinstitutionalization Past

America’s history of caring for people with disabilities has been, at times, haunting. From almshouses and asylums to mental institutions and state hospitals, the nation has explored numerous methods of “dealing” with people who are unable to care safely for themselves.

Beginning in the 1960’s, persons with disabilities and their families initiated a dramatic movement to limit the practice of institutionalization in favor of community-based services. In 1963, President Kennedy called for Congress to develop comprehensive community programs to integrate persons with disabilities into the community. In replacing institutions, community-based programs would provide outpatient care, day treatment, rehabilitation, foster care services, and public education with mental health and related services.

A 1961 report by the Joint Congressional Commission had provided policy recommendations calling for communities to become responsible for the treatment of persons with disabilities in locally-based programs. The ultimate goal was that the system of state hospitals would be completely replaced by a comprehensive community-based service system.

Unfortunately, Congress did not fully follow the Joint Commission’s recommendations. Today, many community programs for persons with disabilities are poorly funded and staffed. Most state hospitals have been closed, yet the full scope of services was never moved into the community. Without additional planning, Tiny Tim is almost certain to experience the pinch of inadequately funded state programs and the frustration of understaffing.

Disability Today – The Ghost of Deinstitutionalization Present

The deinstitutionalization movement has made considerable progress, but budget deficiencies, politics and a variety of other causes have forced cuts and stagnation in community and residential programs across the country. Many states have a moratorium on building new residential programs at the very time that this need has increased. Many communities have reduced attendant care programs that are often essential in providing persons with disabilities essential activities of daily living. Mental health programs have been underfunded for decades, and many experts believe that the lack of services has resulted in the unnecessary “criminalization” of persons with mental illness.

It appears that many of our legislative leaders have lost the vision of community living for persons with disabilities and treat the funding of community programs as “humbug.” Were it not for the dedication of families and the disability organizations which advocate for quality programs, the future would certainly look bleak.

How does that affect Tiny Tim?  Using the example set forth in the novel that gave us this character, “A Christmas Carol” by Charles Dickens, the lesson becomes clear: When the community participates in recognizing and supporting the needs of their disabled citizens, everyone is blessed.

The Immediate Challenge in the Next Decade – The Ghost of Deinstitutionalization Future

The United States is struggling out of a recession, but growth is sluggish. As the United States continues to fight on-going wars overseas, the first wave of Baby Boomers is currently reaching retirement age. There has been a rise in applications for Social Security Disability benefits in the last two years. A shrinking work force and increased need for funding multiple government objectives is putting the Social Security system under great stress.

Many services that have been developed over the past 30 years, such as respite care and day programs, will close due to lack of funding. Even programs that will continue are likely to face extreme cutbacks. Public agencies and caseworkers who traditionally monitor the welfare of persons with disabilities are having their budgets cut and caseloads increased. We can anticipate that the lack of oversight by the traditional government entities will increase the possibility that Tiny Tim will live in substandard conditions.

Although services will become more difficult to obtain, people with disabilities will still rely heavily on these public benefits for at least the next decade. Currently, many services can only be acquired by qualification for Medicaid. In certain states, such as California, private and nonprofit organizations are beginning to fill the gap of services vacated by the government. Private case management may become increasingly important as an alternative to overburdened government caseworkers. But private case management is unlikely to be free, forcing people like Tiny Tim or his advocates to make difficult choices between certain services.

Are These the Shadows of the Things That Will Be, Or Are They Shadows of Things That May Be, Only?

The old saying rings especially true for special needs, “Those who cannot learn from history are doomed to repeat it.” Clearly, learning from the past is key to planning for the future.

Our main lessons are:

1. Families have always been the strongest advocates for our disabled citizens.
2. Benefits and services have changed dramatically in the past 50 years. There is no reason to assume that this situation will not continue.
3. Much of the progress that has been made is due to the commitment of service organizations such as the ARC, United Cerebral Palsy, the National Alliance for the Mentally Ill and many other advocacy organizations working with persons with disabilities and their families. Supporting these organizations is key to continued advocacy for our most vulnerable citizens.
4. Families will continue to need attorney advocates who will help navigate the system, and who will work to sustain – and in some cases create – whatever system may be needed not only to prevent abuse and neglect, but also to promote independence, autonomy and quality of life.

Preparing a special needs trust for Tiny Tim will entail much more than having an attorney fill out a form. The plan must be comprehensive and adjustable to enable long term support. A law practice dedicated to planning for people like Tiny Tim will often take steps that traditional estate planning practices would not need. For example, certain practitioners employ social service staff as part of their practice or maintain a good working relationship with care managers and advisors who can assess the needs of both Tiny Tim and his caregivers.

Practitioners may also develop techniques such as allowing for oversight by an advisory committee or trust protector under the counsel of a knowledgeable attorney to address future changes in the continuum of care. The option of having a trust and a team that re-evaluates itself periodically as needed during the beneficiary’s lifetime can be quite useful.

Hope, Not Fear

The purpose of this article is not to inspire fear, but to encourage hope. As attitudes, technology and treatments improve and advocates, service providers, attorneys, trustees and care managers come together, the future may be brighter than we can currently imagine. The key factors for constructing this future will be respect for each other, conviction in our efforts, and the support of community programs.

With families, advocacy organizations and professionals working together to advocate for the good of persons with disabilities, we will all be able to say, just like Tiny Tim, “God bless us, every one.”

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About this Article: We hope you find this article informative, but it is not legal advice. You should consult your own attorney, who can review your specific situation and account for variations in state law and local practices. Laws and regulations are constantly changing, so the longer it has been since an article was written, the greater the likelihood that the article might be out of date. SNA members focus on this complex, evolving area of law. To locate a member in your state, visit Find an Attorney.

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