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Helping Older Adults With Psychiatric Disabilities Live in the Community, July 15, 2004

Michael B. Friedman, our public policy consultant, gave this testimony to a Forum held by the Most Integrated Settings Coordinating Council (MISCC) on July 15, 2004.

My name is Michael Friedman. I am the Director of the Center for Policy and Advocacy of the Mental Health Associations of New York City and Westchester. I am also chairman of the Geriatric Mental Health Alliance of New York. We organized the Alliance at the end of 2003 because of the failure of our nation and our state to meet the mental health needs of older adults and especially because of the failure to prepare for the elder boom.

Although most older adults are not disabled, and the pervasive sense that they are reflects the fundamental ageism of our society, we have an enormous challenge to confront as the growth of the population of older adults results in increasing numbers of people with disabilities, including psychiatric disabilities.

What will we do? The answer cannot be to rely increasingly on institutional care. Older adults deserve to live where they want—in the community—if at all possible. No one should be forced to live in an adult home or a nursing home just because there are no adequate alternatives in the community.

As the group which is charged to provide the leadership and the strategy that will make it possible for the State of New York to help people with disabilities live in the community, you—The Most Integrated Setting Coordinating Council—have an awesome responsibility. We hope that our brief comments today will be helpful as you consider what is needed to help older adults with psychiatric disabilities lead satisfying lives in the community.

Important Facts

First the basic facts:

The number of older adults in the US will double over the next quarter century from 35 million to 70 million. And they will grow as a percentage of the population from 13% to 20%.
At the same time the population of working age adults will decline by approximately 5%. This will exacerbate the current shortage of adults who care for dependent people, and the burden on families with disabled family members will increase markedly.
During this period the number of older adults with mental illness will double from 7 million to 14 million. The number of older adults with serious and persistent psychiatric disabilities will increase from 350,000 to 700,000, far exceeding the number of people with mental illnesses served in state hospitals at their peak usage.
Minority older adults will also increase both in numbers and as a percent of the population from roughly 17% to 26%. This will make the need for culturally competent service systems even greater than it is now.

Challenges To Be Faced

Clearly there will be many challenges to be faced in the coming years in order to enable older adults with psychiatric disabilities to live in the community. For example:

The life expectancy of people with serious mental illnesses is about ten years less than the general population due to the high rate of suicide, the frequency of accidents, and poor health. We need a program focused on extending the life expectancy of people with psychiatric disabilities including suicide and accident prevention and improved health care.
As a society we rely on families to house and care for their family members with psychiatric disabilities. 30-40% live with their families—more than are in hospitals, community residences, supported housing, nursing homes, and adult homes combined. As parents who take care of their adult children become disabled and die, there will a growing need for housing supported by the state.
Non-institutional housing models for older adults with psychiatric disabilities need to reflect the changing needs of people as they age. More will have physical disabilities, more will have limited ADL skills, more will need facilities accessible to people with disabilities and designed to prevent injuries due to accidents. For some congregate care will be the best answer, but most will be able to live relatively independently if innovative supports are developed.
For those who must live in congregate care facilities such as adult homes and nursing homes, quality of care—especially care for people with mental illnesses and behavioral problems—is of utmost concern. In addition to ongoing revelations about facilities with appalling problems, even the best facilities are simply not equipped to provide high quality mental health services, especially services that offer hope of recovery and return to the community.
Access to psychiatric treatment is a major problem for older adults if only because the mental health system is designed on the assumption that patients will go to mental health professionals who wait in offices for them to come in for treatment. Virtually all geriatric mental health specialists have noted the need for a system which reaches out to older adults where they are.
Almost all older adults with psychiatric disabilities also have physical health problems. Unfortunately, access to physical health care is extremely difficult for people with psychiatric disabilities, who are among the people that the health care system is least prepared to serve and who, if truth be told, are frequently discouraged from coming in for treatment. In addition, treatment of health and mental health conditions needs to be integrated. For this population, providing physical health care at settings where they receive mental health treatment and rehabilitation services may make more sense than expecting primary care settings to offer meaningful mental health services. But however integrated services are designed, the state will need to achieve a level of interdepartmental cooperation rarely, if ever, seen in NYS.
There is a vast shortage of clinically and culturally competent geriatric mental health professionals. This calls for more education and training so as to increase the supply of competent providers. But in light of the declining proportion of working age adults in our society, it also calls for rethinking roles. Since most older adults are well and able, with a little imagination they can be a major part of the solution.
Psychiatric rehabilitation approaches, which have become a great source of hope and recovery for people with psychiatric disabilities, are fundamentally geared to the developmental interests of working age adults. These approaches need some reworking to be relevant to older adults, who may prefer “retirement” to work. Opportunities for activity and involvement will be key, and it only makes sense to integrate such opportunities offered by the mental health system with those offered by the aging system.
Rules governing mental health, health, and aging services are often ill-suited to providing services responsive to the unique needs of older adults, especially integrated services. A full review is in order to identify, and remove, legal, regulatory, and structural barriers to providing good services.
Finally, fiscal models are generally out of alignment with the service needs of older adults with serious mental illness. These too need a full review.

Leadership and Determination Required at All Levels of State Government

Confronting these challenges will require the government of New York State to commit itself to preparing for the elder boom. We need leadership and determination in the Office of Mental Health, the Department of Health, and the Office for the Aging. We need leadership and determination in the Legislature and the Governor’s Office. And we need this Council to articulate a vision of a society in which older adults with psychiatric disabilities are enabled to live, and participate in, the social mainstream.

Thank you for the opportunity to speak today.

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