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Advocacy > Be An Advocate
Stop Neglecting Families
An Opinion by Michael B. Friedman, CSW
First Published in Mental Health News, Winter 2002
Tribute to the People Who Provide Support for the Mentally Ill
This issue of Mental Health News pays tribute to the National Alliance for the Mentally
Ill (NAMI) and thus to the people who provide care and support to family members with
psychiatric disabilities. It is a well-deserved tribute, a statement of recognition and
gratitude that, unfortunately, is not paralleled in public mental health policy. In this
society we take the care that families provide for granted, and neither New York State nor
the federal government does much to help families to manage the burden they voluntarily
took on when institution-based mental health policy was replaced with community
mental health policy.
It is commonplace that in the early phases of deinstitutionalization many people with
serious mental illness were abandoned in the community with inadequate housing,
treatment and supports. But it is rarely acknowledged that deinstitutionalization 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, who simply would not
allow them to live in the squalid and dangerous housing that was available for people on
public assistance.
It was a major de facto change in social policy, from governmental responsibility for
people with serious and long-term mental illnesses to family responsibility. It was a shift
in social policy that, because it was not acknowledged, abandoned families, as well as
their family members with mental illnesses, without the support, or even the gratitude,
that they deserve for the care that they provide.
Families Provide Services That Should Come From a Comprehensive
Mental Health System
It is important to recognize that many families provide the full range of community
supports that should be provided by a comprehensive mental health system.
For example, a great many families provide:
- Housing for family members with mental illnesses. According to the best
estimates available, a third or more of people with serious, long-term mental
illnesses live with their parents. That means that more people with mental
illnesses live with their families than in housing certified or funded by OMH or in
State hospitals or in nursing homes or in adult homes. Apparently families are the
largest housing provider for people with mental illnesses.
- Intensive case management. Not only do they serve as the link among multiple
and changing service providers, not only do they negotiate systems that frequently
don't work smoothly; they are also on call 24 hours a day, 7 days a week. Often
they are the mobile crisis team by default for their family member.
- Financial assistance, paying for sundry pleasures that no one living on income
maintenance can afford. And families even pay for treatment and case
management services when the public services are not available or good enough.
- Serve as great mental health advocates - as NAMI illustrates. In its early days,
NAMI and the family members it represented focused heavily on protecting the
institutional services on which our society had depended for more than a century.
But increasingly families have realized that recovery is a real possibility and that
their family members can live in the community independently or with greater
reliance on peers than on families. Families, therefore, have become great
advocates for a mental health system built on expectations of recovery. They are
also vocal spokespeople for overcoming stigma and discrimination and for
recognition of the basic human rights of people with mental illnesses-rights to
housing, to work, to mental health insurance, to access to the mainstream and to
be treated with dignity.
Given all that families do, it is appalling that they are so neglected by the mental health
system, which has not responded meaningfully to the needs of families or provided them
with the support they deserve as major providers of care.
What Should Government Do To Help?
Over the past fifteen years, I have spent a good deal of time in discussion with family
members and perhaps as importantly have learned a great deal from having myself been
responsible for a family member with a disabling mental illness. Several themes have
emerged:
- The mental health system is not helpful enough when there is a crisis that requires an
immediate response. Too often it is only the police or an ambulance that can arrive
quickly enough, setting in motion a process that frequently is emotionally painful and
sometimes destructive. Alternative crisis intervention services are essential.
- Professionals are still too often disdainful of families and primary consumers and do
not treat them as partners in care. Training using a mix of families, consumers and
professionals as trainers could be helpful.
- There are not enough psycho educational opportunities for families, especially for
families experiencing mental illness for the first time. This is particularly
discouraging because psycho education is one of the few interventions other than
medication for which there is research evidence of effectiveness.
- Mutual support is highly valued by families. Government support for the
development of family resource centers would be invaluable, particularly for centers
which would emphasize outreach to families who are not now members of NAMI,
including cultural minorities and "first break" families.
- Parents worry about what will happen to their family members with mental illnesses
after the parents die or become disabled. More support for future care planning to
help families and consumers to prepare for the inevitable would be very useful.
- Finally, providing support to family members with disabilities is expensive. One
study estimated that family members provide more than $200 billion a year worth of
home care to family members with disabilities (physical as well as mental).
Modifications of tax and income maintenance policy, to provide tax credits for
families and to provide for full SSI benefits for people with psychiatric disabilities
who live with their families could ease the financial burden. And it would show the
gratitude of a society for the burden families have taken on since the massive shift of
mental health policy took place in the middle of the 20th century.
(Michael B. Friedman is the Public Policy Consultant for the Mental Health Associations of New York City and
Westchester County. The opinions expressed in this column are his own and not necessarily the positions of the
Mental Health Associations.)
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