A family that has a son or daughter with mental retardation or other disabilities may have needs above and beyond those of other families. These needs can often be met by family support programs and services provided by state, local, not-for-profit or for-profit agencies. Family supports vary in type and quality from state-to-state and even between and within local communities.
Family support is often defined as "whatever it takes" to increase the family's ability to care for their child, improve the quality of the family's life and prevent a son or daughter with a disability from having to live outside his or her natural home. Some examples of family supports are:
Respite and child care
Changes to the family's home or car
Support services (counseling for families, parent-to-parent support, self-help groups, sibling groups, etc.)
In-home assistance (to help with the personal needs of the individual with a disability, to assist with household chores, etc.)
Personal futures planning for the whole family
Financial or other types of assistance to meet needs that may arise when a family member has a disability
Education and training for families to help them develop skills to meet the needs of the family member with a disability. This may include providing the family with disability information and/or advocacy training
Information for families about all available resources ~ Service coordination/case management
Recreation
Assistance with programs that provide services
Crisis intervention
Special clothing
Transportation to and from services
Medical and dental services
Testing
Behavior intervention
Any other support needed by the family
The goals of good family support should be:
* To keep families together (by providing whatever it takes until the person with a disability desires to or is able to live independently). * To improve the caregiving ability of families and to improve their ability to meet the many needs of the family member with a disability.
To respect cultural, economic, social and spiritual differences.
* To help families find and use available supports.
..and you know you are receiving good family supports when...
# you have time to work if you wish, spend time with other family members or take part in leisure activities.
Kit is easier caring for your family member with a disability at home.
your family's emotional and physical well-being increases.
your family is able to use its money as other people do.
your family has better access to community services such as doctors, dentists and recreation, and you are more visible in your community.
The
The Arc Family Support Quality Checklist
Having many different family support services and programs is important. But it's also important to have good quality family supports. For this reason, The Arc, as part of a project through the Minnesota Governor's Planning Council on Developmental Disabilities, brought together parents, professionals and other experts on family support to discuss and develop the questions below to help families know if they are receiving good quality family supports.
How will this checklist help your family? Look at the questions below and think about the family supports your family receives. Then check if your family supports Always, Sometimes or Never meet these signs of good quality. Checking Always to each question shows a high quality of services and programs. However, a lot of Never checks means that your family supports need improvement. And even family supports that Sometimes meet these signs of quality may need to improve.
Join with The Arc and other disability groups to advocate for good quality family supports. Share this information with other families, local service providers and government officials in your community!
Information and Planning ALWAYS SOMETIMES NEVER
* Do you feel information is easily available in order to seek support?
* Is the paperwork to receive family support services simple to understand and fill O out (e.g., easy to read, short application form, etc.)?
* Is the family urged to be part of the planning for support services?
* Does the family support service offer many different services, supports and equipment to assist your family member?
Are you given a choice of service provide? O O ln
* Is the information you receive from support service providers current and reliable? O O 0
1 When a meeting of support providers is necessary, do you help decide who will attend the meeting and when it will be held?
* Does the family support program advertise its services in different languages and formats (e.g., easy-to-read for people who cannot read, Braille for people who are O O 0 blind, etc)?
Service Availability 9 Can you get family supports when needed (e.g., can you make contact or receive supports 24 hours a day)? * Can you get to where the supports are provided or can the support services come to you?
* Are services accessible (i.e., are people with mental and physical disabilities able to get to and use the services)?
* Are good quality services available regardless of where you live?
* Does the program obtain hard-to-find services for the family?
* Does the family support service encourage the use of natural supports (i.e., neighbors, fiends, relatives, community volunteers, etc.)?
Can you get services whether or not the family can pay for them?
* Do you qualify for services based on your family member's disability and not just on your income?
* Can you get more' services even if you are already receiving some family supports?
ALWAYS SOMETIMES NEVER
If you are getting vouchers or cash payments for services, does the program allow you to buy the service from a provider of your choice?
* Does the program give the services at no or very low cost and not require you to spend a lot of money to match or share the costs of services?
* Is the family support service available without causing the loss of other necessary family resources (e.g., income assistance, health benefits, etc.)?
O 0
* Can you get supports that meet your families unique needs which include cultural, language and ethnic background?
* Does your family support program provide services during a crisis?
Are you urged to contact and meet with other parents (parent-to-parent networking)?
* Is advocacy skills training given (or available) for the entire family?
Staffing
* Is there a single contact person to help you obtain services for your family?
* Are the supports provided by good staff who know about services and how to work with people with disabilities?
* Does your service coordinator or case manager:
- accept and consider your ideas?
- act sincere and respected toward you; and not judge you? - treat you like a partner instead of a "client"?
- pay full attention during appointments and meetings?
- show interest in what you think and say? - respond to your concerns?
. stand up for your family and not the service system?
- arrange other services when necessary?
* Do provide carefully and clearly explain their services?
* When the service providers come to your home, are they invited by you?
* Are providers sensitive to and respectful of - your culture and lifestyle? - your verbal skills?
- your family's needs and preferences?
~ Do provide keep their promises about supports and services?
Program Values
* Does the support provider share ideas and belief about families/family supports? O O 0
* Does your support service build on your family's strengths and abilities?
Does the family support service offer services that are not forced on your family?
* Does your support give you hope for the future and raise your expectations?
Do you feel helped by the supports, not hurt by them? c1
Does the support service make the public aware of the abilities of people with disabilities?
Tips for Working with Famiiy Supports
#Be informed about your rights,
~ Think through both what you k and what you & before meeting with potential service providers.
~ Be persistent and firm about what you need and want.
~ Bring along a friend when you met with family support service providers. Another person can help provide the emotional support you n-my need. You can also enlist support from family members or your local chapter of The Arc.
advocate for family support providers. They may need consumers like you to push for funding, changes in regulations, etc.
~ Let providers know when they've been helpful to you.
# Take notes during meetings to ensure there are no misunderstandings later.
~ Keep records, duplicate copies of forms, etc. from your family support services.
*+*
For more information on family support contact:
National Headquarters P.O. Box 1047
Arlington, Texas 76004
Voice 1-800-433-5255 TDD 1-800-855-1155 (ask operator to call collect 817-277-0553)
This publication was supported in part by Contract Number 25200 under provisions of the Developmental Disabilities Act of 1991 (P.L. 101-496) from the Minnesota Department of Administration, Governor's Planning Council on Developmental Disabilities. The views expressed herein do not necessarily reflect the position or policy of the Governor's Planning Council on Developmental Disabilities nor that of the Minnesota Department of Administration.
Family Support Project The Arc National Headquarters P.O. Box 1047 Arlington, Texas 76004
Family Support Forum Participants
In August of 1992, The Arc convened a consensus forum to develop the information for this Family Support Quality Check list. The group consisted of consumers, family members and professionals including
Susan Arneaud, Director, Family Support Subsidy Program, Michigan Department of Mental Health, Lansing, Michigan
Mary Ellen Burdick, Director, ARC of Allegheny County Esprit Program, Pittsburgh, Pennsylvania
Carlos Cordova, Parent, Arlingtnn, Texas
Jim Gardner, Parent and President of The ARC, Shreveport, Louisiana
Sally Gardner, Parent, Shreveport, Louisiana
Ed Guthrie, Executjve Director, Orleans County ARC, Albion, New York
Cindy Hatcher, Parent, Pittsburgh, Pennsylvania
Naomi Karp, Consultant, Human SSMCeS Research Institute, Boston, Massachusetts
Shirley Reynolds, Sibling and board member of the New York Planning Council On Developmental Disabilities,
Renseealer, New York
Fran Smith, Parent, forum facilitator and independent mnsultant, Richmond, California
Sue Swenson, Parent, Minneapolis, Minneeota
Joan Thompson, Parent and President of The Arc of Ohio, New Carlisle, Ohio
Rutherford Turnbull, Parent and Co-Director, Beach Center on Families and Disability, The University of Kansas, Lawrence, Kansas
Colleen Wieck, Ph.D., Executive Director, Minnesota Covernor's Planning Council on Developmental Disabilities, St. Paul, Minnesota
Alan Abeson, Ed.D., Executive Director, The AC) Arlington, Texas
Sharon Davis, Ph.D., Director, The AC'S Department of Research and Program Services, Arlington, Texas
Rick Berkobien, Assistant Director, The &c's Department of Research and Program Services, Arlington, Texas
Debby Ingram, Research Associate, The ARC's Family Support Project, Arlingtan, Texas
