	We Can Help. 914-345-5900 • help@mhawestchester.org

Advocacy > Be An Advocate

It’s Time for Real Family Support

An Opinion by Michael B. Friedman, CSW
First Published in NAMI-NYS Fall 1999

The early phases of deinstitutionalization resulted not only in the abandonment of many people with serious mental illness with inadequate housing, treatment, and supports; it also resulted in a great shift from institutional care to family care. As many as 2/3 of the people who left State hospitals returned to live with their families. Allowing them to live in the sort of dilapidated and dangerous housing that was available for people on welfare or Social Security Disability was simply not acceptable to their families.

This amounted to a major de facto change in social policy, from governmental responsibility for people with serious and long-term mental illnesses to family responsibility. It is a shift in social policy which has never been acknowledged; and families have never gotten the support, or even the gratitude, that they deserve for providing the amount of care that they provide.

It is time to develop a family support program commensurate with the care that families provide.

How much do they provide?

Many, of course, provide housing. According to the best estimates available, a third or more of people with serious, long-term mental illnesses live with their parents. It could be as high as half. That means that more people with mental illnesses live with their families than in housing certified or funded by OMH (New York State Office of Mental Health) or in State hospitals or in nursing homes or in adult homes. Apparently, families are the largest housing provider.

But families provide much more than housing. They provide the kinds of supports with activities of daily living that community residence counselors are paid to provide. They provide intensive case management. Not only do they serve as the link among multiple and changing service providers, not only do they negotiate systems which frequently don’t work smoothly, they are also on call 24 hours a day, 7 days a week. Frequently, they are, by default, the mobile crisis team for their family member.

Families also provide financial assistance, paying for sundry pleasures that no one living on income maintenance can afford or even paying for treatment and case management services when they think that the public services available to their child are not good enough.

And let’s not forget that families provide companionship for their children, who sometimes don’t connect easily with peers or are too uncomfortable to go into mainstream social settings by themselves. Yes, family relationships can be tense, but they can also be warm and satisfying.

Families As Advocates

Increasingly families have come to understand that recovery is a live possibility for their loved ones, that they can live independently or with greater reliance on peers than on families. And families, therefore, have become great advocates for a mental health system built on expectations of recovery. They have become vocal spokespeople for overcoming stigma and discrimination, for recognition of the basic human rights of their family members-rights to housing, to work, to access to the mainstream, and to be treated with dignity.

What Should Government Do to Help These Families?

Given all that families do, what should government do to help them? What are the essential elements of a meaningful family support initiative? Through my work with The Action Committee to Improve Mental Health Policy, which includes representatives of NAMI (National Alliance for the Mentally Ill) affiliates in the New York City area, I’ve been privileged to discuss this question with thoughtful and knowledgeable family members.

These are the elements which have emerged from our discussion.

Enhanced crisis and respite services
Training for professionals regarding treating families and primary consumers as partners in care, using families, consumers and professionals as trainers
Increased psychoeducational opportunities for families using professionals, family members and consumers as educators
The development of family resource centers (perhaps run by NAMI affiliates) through which education and mutual support can be provided, with an emphasis on outreach to families who are not now members of NAMI affiliates, especially cultural minorities and “first break” families
More support for future care planning to help families and consumers to prepare for what will happen after the parents die or become disabled
Modifications of tax and income maintenance policy, to provide tax credits for families and to provide for full SSI (Supplementary Security Income) benefits for people with psychiatric disabilities who live with their families

Commissioner Stone established the Commissioner’s Committee for Families. Hopefully this Committee will push hard for the Office of Mental Health to develop a family support initiative which will be built on an understanding of how much families do and which will draw on the agenda outlined above.

(Michael B. Friedman is the Public Policy Consultant for the Mental Health Associations of Westchester County and New York City. The opinions expressed in this column are his own and not necessarily shared by the MHAs.)

Return to the top of the page.