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Family support programs growing: more states offer an increasingly diverse menu of family support services than ever before.

Imagine a long hectic weekend spent caring for your children, including one child with a physical disability. You turn your back for one moment and a child throws his toy across the room, shattering the front picture window. You can't afford to replace the window, but you cannot live with a hole in your window, either.

What can you do? Where can you turn for help? Family support programs, which once offered only respite care, now provide a wide variety of services and financial assistance to help parents of children with developmental disabilities or severe emotional problems to deal with the ordinary and not-so-ordinary challenges of daily living. A cash subsidy for window repair could resolve the unexpected crisis.

Current Status of Family Support

More states offer an increasingly diverse menu of family support services than ever before. Forty-eight states offer some form of family support. Some have more than one department or agency that provides family support -- usually under the auspices of services for people with developmental disabilities or mental retardation. Of the 70 programs available, almost half are protected by state laws -- so they are less likely to be cut from the budget. Programs may pay for or provide respite care, home nursing, physical therapy, counseling, home adaptations or case management, as well as other services.

In spite of improved family support programs, it is almost impossible to anticipate the unique needs of every family. So more and more programs offer a combination of services and cash assistance. Cash subsidy programs pay for services or products -- such as washers and dryers for families with children who have incontinence problems -- that are not covered by insurance or other sources of financial aid.

But family support services, let alone cash subsidies, are not automatically available. The menu of program services differs from state to state. Eligibility requirements also vary. Some programs offer full services to a few families chosen by lottery. Others provide assistance such as cash subsidies to many families but place fight restrictions on what they will cover. Even in many states where family support services are required by state law, families often don't get the help that they need.

Support budgets are often too small to meet the needs of every family. Some states spend as little as $20,000 each year and support only 15 families. Others spend as much as $50,000,000 on 60,000 families. In fact, nationwide only about three percent of developmental disability funding is spent on family support programs; however, that's better than three years ago, when family support received only one-and-a-half percent.


Family support is gaining momentum. More and more advocacy groups for parents of children with special needs are rallying for better services for families. Along with state officials, they are taking steps to create family support legislation.

In 1990, 19 states had 20 mandated programs. Today more than 25 states mandate an estimated 32 programs and several other states are considering legislation. Organizations such as the Family Support Syndicate work together to influence new legislation.

Support services are more available than ever and cover an increasing range of needs. Family support used to be synonymous with respite care. Today the range of available services is limited only by budget and imagination. Programs attempt to be flexible and varied enough to meet the unique needs of each exceptional family. In 1990, 14 states offered combined programs -- cash subsidies with direct services; 19 states offered combined programs by 1992. The number of programs is growing (see table, page 40).

State-by-state eligibility criteria for family support services, which used to target only families of children with developmental disabilities, are beginning to include families of children with chronic illnesses or severe emotional disorders. Some experts suggest that families of all children with disabilities be considered together rather than in separate family support programs based on specific disabilities.

Values that grew out of the family support movement -- such as the right of children with disabilities to be educated in regular public schools with other children -- are beginning to find their way into human service programs available to all families. Families and service providers are beginning to look for ways to use ordinary, readily-available resources to support children with disabilities and their families. For example, the St. Louis branch of the Young Men's Christian Association (YMCA), the largest day-care provider in the United States, worked with local family support groups to include children with disabilities in day-care programs.

Goals for the Future

In spite of great strides over the last few years, family support still has a long way to go.

* Family support services can help steer people through the system by identifying resources, offering expert advice and advocating for the rights of families in an efficient, caring manner. Currently, some state programs are criticized for not using their relatively scarce funds efficiently.

* The challenge for state governments is to make sure that evolving systems of family support respond to the needs of all families - regardless of race, creed, economic status or ability/disability level. Today members of minority groups, including parents with disabilities, lack access to some programs.

* Service providers need to be educated about the new perspective of family-based support services. They need to learn to allow families to choose services and make their own decisions, and to encourage family members and people with disabilities to become informed advocates.

Family support is a valuable resource for parents who have a child with a disability. But because programs and eligibility requirements vary from state-to-state it can be difficult for parents to get the services and financial assistance they need.

Information provided by Human Services Research Institute (HSRl), Cambridge, Mass. Special thanks to Valerie Bradley, president of HSRI.

Family Support Syndicate

The Family Support Syndicate is a nationwide network of grass roots organizations interested in improving family support services Syndicate members share ideas, concerns and nformation about issues that affect people with disabilities and their families. Forty-one family support groups from 34 states currently participate.

Human Services Research Institute (HSRI) organized the syndicate.* Each month HSRI collects information on a specific topic from members of the syndicate. Topics range from "What is family support?" to "How can we pay for family support services?" HSRI distributes the information to all member groups.

The syndicate also holds teleconferences (complete with handouts) to provide direct communication between groups. Organizations that are not members of the syndicate can participate f they are interested in family support issues. Sixty groups registered for the most recent teleconference.

Urge your local support group to join the Family Support Syndicate. Contact Kerri Melda at HSRI, (503) 362-5682, for more information.

* A grant to HSRI ior disseminating information will end on September 30th. HSRI will seek additional funding.

HSRI published information on topics addressed by the syndicate as three volumes -- What is Family Support? and Why Do We Want It?; What is Working in Family Support?; and How Do We Spread the Word? Volumes cost $12 each. Contact HSRI at (503) 362-5682 to place an order.


 Child Care
 Sitter Service

 Homemaker Services
 Attendant Care
 Home Health Care

Adaptive Equipment
Home Modification


Family Counseling
Family Support Groups


Information & Referral

 Special Diet
 Special Clothing
 Health Insurance
 Vehicle Modification
 Rent Assistance
 Home Repairs


Medical & Dental Care
Nursing Services
Behavior Management
Individual Counseling
Speech Therapy
Occupational Therapy
Physical Therapy
Skill Training


Discretionary Cash


Source: Family Support Services
in the United States: An End of
Decade Status Report, February
1990, page 40, Human Services
Research Institute (HSRI), 2336
Massachusetts Ave., Cambridge,
MA 02140


* Families are the greatest natural resources
 for children.
* Children need enduring everyday
 relationships with families.
* Each family has unique needs. Supports
 should be tailored to those needs by being
 flexible, readily available and sensitive to
 cultural differences.
* Supports must address whole families,
 not just children with disabilities.
* Each family should be involved in the
 process of planning, using and evaluating
 support services.
* Supports should promote family unity.
* All families should be able to choose from
 a coordinated menu of statewide services.

Adapted from National Family Support Legislation to Become a
Reality in 1993, United Cerebral Palsy Association. Copies
available from UCPA, Allan Bergman, 1522 K Street, NW,
Washington, D.C. 20005.
COPYRIGHT 1993 EP Global Communications, Inc.
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1993 Gale, Cengage Learning. All rights reserved.

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Title Annotation:includes related articles on what family support is, what its principles are, notes on the Family Support Syndicate, and a listing of in-state family support resources
Publication:The Exceptional Parent
Article Type:Directory
Date:Jul 1, 1993
Previous Article:Finding the fun: the importance of play for parents.
Next Article:ATA scrapbook of success.

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