Family Support Network

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Family Support

Who We Are

The mission of the Family Support Network is to unify individuals with disabilities and their families to advocate for funding, services, and community resources that strengthen and support the individual and the family directly by responding to their individual needs and empowering them to live in their own homes. The Family Support Network further seeks to ensure the continuation of all individual supports throughout the life span of the individual.

Family Support Best Practices

Best Practices Checklist

  • Focus on the entire family
  • Change as a family’s needs, roles, and ages change
  • Encourage families to express their own needs and decide how their needs will be met
  • Provide families and individuals with control of their dollars
  • Treat people with disabilities and their families with dignity by respecting their individual choices and preferences
  • Respect cultural, economic, social, and spiritual differences
  • Encourage families to use the natural community resources
  • Provide supports and services that are easy to find and easy to use
  • Provide families with equal access regardless of where they live

What is Family Support?

Doing whatever it takes for families that include a member with a disability to just be families.

Family Driven: Each family leads the decision-making process concerning the type and amount of support they receive;
Easy To Use: Families are not overwhelmed by paperwork and red tape; and
Flexible: Families can choose supports and services based on their individual needs and preferences.


  • To keep families together until the person with a disability chooses to live independently;
  • To enhance a family’s ability to meet the many needs of their family member with a disability;
  • To improve the quality of supports to families while minimizing the need and the cost of out-or-home placement;
  • To allow the family to participate in integrated leisure, recreational, and social activities; and
  • To make a positive difference in the life of the person with a disability as well as the lives of all family members.

“Families must be at the center of the decision-making process” —Human Services Research Institute, June 1991

Quality Family Support Programs

  • Focus on the entire family;
  • Change as the family’s needs roles, and ages change;
  • Encourage families to express their own needs and decide how their needs will be met;
  • Treat people with disabilities and their families with dignity by respecting their individuals choices and preferences;
  • Respect cultural, economic, social, and spiritual differences;
  • Encourage families to use the natural community resources; and
  • Provide supports and services that are easy to find and easy to use.

Potential Family Supports

Centered around the Person with Disabilities

  • diagnosis and assessment
  • therapeutic services
  • medical/dental services
  • home health care
  • recreational opportunity
  • special clothing and diets
  • transportation
  • adaptive equipment
  • housing adaptations
  • adequate health insurance

Centered Around Family Members

  • information and referral
  • service coordination
  • temporary relief/respite
  • family counseling
  • parent/sibling education
  • day or child care
  • financial assistance
  • future financial planning
  • mutual support groups
  • housing modifications

Ask Yourself These Questions
• How are you treated by your family support program? — Do you feel welcome and heard
• How much control do you have over the supports you receive?
• How is information exchanged between you and the program? — Do you get the information that you need, and are program staff asking the right questions?
• What actions are taken to plan for the supports you receive? — Is planning a partnership process?
• Do the supports you receive suit your needs? — Do supports change with your changing needs?
• Is the program having a positive impact on your life? — How would you judge the results?

• Financial problems
• Marital stress
• Missed opportunities
• Fragmented services
• Confusing and contradictory
• Information
• Exclusion from decision-making
• Stigma
• Isolation
• Uncertainty

Natural Supports
• Neighbors
• Extended family
• Friends
• Religious organizations
• Schools
• Community


The 10 Commandments of Community Advocacy OR Getting Out of Systems and Into Your Community

by Kathie Snow, Parent*

1. LOOK FOR NATURAL SUPPORTS. Before you go to a service provider for help, try to find what you need from the natural supports that exist in your community. Ask old friends, new friends, schools, churches, scouts, park and recreation, community clubs, service organizations and any other “typical” community resource. Use the same opportunities you would use if disability wasn’t involved.

2. BE SPECIFIC AND FLEXIBLE. You know what you want and need. Be bold and tell folks exactly what it is. At the same time, be willing to compromise for the best possible solution for all.

3. EXPECT INCLUSION. Attitude is EVERYTHING! When utilizing natural supports, expect that you’ll get what you want. Stop apologizing for disabilities! When someone tells you “We’ve never done this before”, reply with your biggest smile, “Neither have I! We’ll learn together!”

4. EXPERIENCE THE “DIGNITY OF RISK” Face the fear of being told “No!” More people will say “Yes!” than “No!” Sometimes we have to dig a little deeper to find those folks. They’re out there! Keep looking!

5. BECOME A “REGULAR” PERSON. Join the PTA, volunteer, help plan school parties, etc. Volunteer for typical community activities; scouts, church, fundraisers, cultural events. Join community organizations. Be seen, be heard, and become known! Let others see you as “regular” not just “special”. Often people who are not connected to the disability community can be your best allies.

6. DEVELOP AND NURTURE RELATIONSHIPS. Offer yourself as a “natural support” to others in your community. Help others and they’ll help you. We can’t be just “takers,” we must also be “givers”. Trade your help for someone else’s. “I’ll help with your yard work. Can you help me with _______?” Be creative!

7. BE PROACTIVE, NOT REACTIVE. Plan for the future, anticipate issues/problems, and think long term. Be a problem solver not a problem-maker! If you have a problem to discuss, always have possible solutions. If you don’t, others’ solutions might be worse than the original problem.

8. THINK WIN/WIN, NOT WIN/LOSE. No one wants to feel like they’ve “lost”. Allow people to save face. Use strategies that allow everyone to feel they’ve “won”. The next time you interact with them, they’ll be more likely to provide the support you need.


  • Identify & Value Your Allies
  • Combine Style and Substance
  • Respect and Teach Your Adversaries
  • Practice Finesse and Diplomacy

10. BE PATIENT. If you’re a parent, what did you know about disability issues before your child was diagnosed? We have to teach others just like we had to learn. Remember, this is all about you or your family and the future! Stay focused on what’s really important. It’s NOT about egos, winning/losing, who’s right and who’s wrong.

*Kathie Snow is the parent of two children, one of who has a disability, a 1991 Graduate of the Texas Partners in Policymaking Leadership training program. She now lives in Colorado with her family and has recently been awarded a contract to be the Coordinator for Idaho partners for 1997.


Important Information Concerning Case Coordination

Following are two important articles concerning case coordination in the state of Illinois. The first one by Rene Leininger talks about what an ideal system of case coordination should be and what it can do for people with disabilities in Illinois. The second one, written by the Executive Director of an Independent Case Coordination Agency, talks about the status of Case Coordination in Illinois today.

Two important changes for people with disabilities or mental illness are taking place within our state government today. Both have the potential of having dramatic positive or negative effects on the lives of individuals with disabilities or mental illness and their families.

The first is the formation of the eight regional Networks serving people with disabilities recently directed by DMHDD Director Ann Patla. Director Patla has decreed that there will be only one lead Case Coordination Agency for each region. That Agency has the option of subcontracting with other agencies if it chooses.

The second is the organization of the Human Services “Super Agency” recently decreed by Governor Edgar.

The statewide Consumer and Family Advisory Council for Developmental Disabilities has made a recommendation to Director Patla that all Case Coordination Agencies need to be free-standing (not deliver any other services but case coordination) and that none of them should be run by a for-profit entity.

We are including these articles to educate you both as you advocate individually for yourself or your loved ones, and also so that you can add your voice to the chorus of advocates calling for system change that enhances service delivery to people with disabilities.

Please read the following material thoughtfully and then take time to write Director Ann Patla, DMHDD, 401 Stratton Bldg., Springfield, IL, 62765 and Governor Edgar, 207 State House, Springfield, IL. 62706. Express your support of Independent, Not-For-Profit Case Coordination. Thank You.


The State of Case Coordination Today

by Matthew Toohey, Executive Director, UCP Blackhawk & President, Illinois Association of Individual Service Coordination Agencies

At the present time, the Department of Mental Health and Developmental Disabilities (DMHDD) has a service coordination system that is a mixture of independent, not-for-profit agencies and other agencies that provide services and supports to persons with developmental disabilities. The services provided by these agencies are commonly called Case Coordination (either independent or provider agency), Pre-Admission Screening (independent), Bogard Service Coordination (independent), and Medicaid Waiver Case Coordination (independent and provider agency).

The only activities that are currently required are Bogard Service Coordination (under a federal court decree), Medicaid Waiver Case Coordination and Pre-Admission Screening. The only activity that is required to be independent is Bogard Service Coordination, although Pre-Admission Screening is currently done only by independent entities.

DMHDD has expressed a desire to contract with only one entity in each of its DD Networks. This entity would act as a “care management” entity and would provide yet to be determined services. The Director of DMHDD (Ann Patla) has said that this entity would not be a statewide for-profit organization. The “care management” entity would be allowed to subcontract certain services/activities to other independent service coordination agencies within the DD Network they serve.

DMHDD has also expressed a desire to have the new system in place by November 1, 1996. However, it is not known if that time frame will be achieved. Currently there are twenty agencies that are viewed by DMHDD as independent service coordination agencies. As one might imagine, twenty agencies with their own governing boards trying to arrive at acceptable arrangements with those agencies in the same network is a difficult task.

Suffice it to say, the current system of service coordination funded under a variety of DMHDD programs is fragmented and is in need of change in order to provide individuals with developmental disabilities and their families with one place to go for assistance in their local area. There are many who feel that the system of independent service coordination is not needed, is too costly, and is not effective. There are those who feel that service coordination can and should be provided by community agencies that provide services.

On the other side are those who feel that independent service coordination should be the backbone of the service system as it provides choices and options to people and their families as they access the maze of service. Independent service coordination can also be an effective and efficient method of linking people to services and support that they need rather than what someone else thinks they need. If independent service coordination is effectively implemented, then scarce resources can be better utilized through service brokerage with numerous providers for services that the person or family desires.

In the “big picture,” service coordination funding is only about 1% of the entire DMHDD budget. That is a small price to pay for assisting persons with developmental disabilities, their families, community agencies, and DMHDD in the effective and efficient use of all available resources. More importantly, it goes a long way to assuring that persons with developmental disabilities can become greater participants in their community.


Independent Service Coordination: The Past, Present and Future in Illinois

Executive Summary by: Rene Leininger, Director, Illinois Planning Council on Developmental Disabilities

WHAT IS INDEPENDENT SERVICE COORDINATION? The independence of service coordination can best be described through analogy:

The service system is like a large shopping mall with the anchor store being a Wal-Mart. Wal-Mart has a greeter, who helps customers in many ways while they are shopping at Wal-Mart. This greeter is like the service coordinator within a multi-service providing agency. In contrast, the “independent service coordinator” doesn’t work for any store in the mall but works only for the customer. He/she knows all the stores and, therefore, can help customers know where to shop and can help them with problems with any of the stores. This independent. greeter has positive relationships with all of the stores and knows which stores can be of the greatest value to certain customers. He/she also helps the stores by providing them with market research on what customers like and don’t like. The help that the independent “greeter” provides to the customer and the stores is not possible if the greeter works for any of the stores in the mall.

THE HISTORY OF SERVICE COORDINATION. Some service coordination has been required of all Illinois human services agencies for over two decades. Service coordination is provided under a multitude of federal and state mandates and funding sources. The only individuals, however, who are guaranteed independent service coordination are those individuals who are members of the Bogard Consent Decree class. Independent service coordination has emerged gradually with the first independent agency starting in 1980. During the 1980’s the importance of independence for service coordination gained momentum as indicated by activities and events across the nation and in Illinois. More and more, people agreed on the importance of providing individuals and families opportunities for conflict-free assistance in identifying service options and making choices regarding services.

The importance and preference for a separate and distinct independent service coordination system has been embodied in three policy initiatives since 1990. These are: The House Bill 69 (Public Act 86-921) Advisory Committee Status Report, The Common Pursuit, Improving the Quality of Life for Illinois Citizens with Disabilities: Implications for Restructuring the Planning and Management of State Services; and, Strategic Planning for Services and Supports in Illinois. The committees and groups who developed the policy papers were representative of advocacy groups, service providing agencies, consumers, families and state agencies from across Illinois.

WHY IS INDEPENDENT SERVICE COORDINATION IMPORTANT FOR PEOPLE AND THE STATE OF ILLINOIS? Independent service coordination can provide a means for improvement in the entire service delivery system by:

1) assuring conflict-free assistance, choices and independence for consumers;

2) helping people find alternatives to costly and restrictive institutional and/or segregated living;

3) allowing people to have flexible and more individualized support and services and increased access to more natural support systems;

4) providing conflict-free individual advocacy for persons seeking services and in exercising their rights and responsibilities as citizens;

5) providing one single place for individuals and their families to go to receive assistance from the service delivery system and helping individuals and their families during transitions;

6) increasing the accountability and responsiveness of the service delivery system; and,

7) assisting Illinois without conflict in organizing and managing emerging service delivery networks.

THE EFFECT OF THE BOGARD CONSENT DECREE. The Bogard Consent Decree required Illinois to provide long term case coordination services to class members residing in Illinois nursing homes. To carry this out, the Decree ordered the establishment of independent service coordination agencies throughout Illinois requiring:

1) the establishment of conflict of interest procedures;

2) that service coordinators have no functions other than service coordination;

3) that no more than 10% of the independent service coordination board can be individuals who work for or are on the boards of direct service providers; and,

4) that independent service coordinators provide no direct services.

As a result of Bogard, a system of independent service coordinators has already been put into place offering Illinois an existing infrastructure to implement independent service coordination fully.

RECOMMENDATIONS. The work group on independent service coordination recommends:

The State of Illinois should adopt a policy regarding free-standing and independent service coordination accessible to every person/family who seeks assistance from the human service system as a vital element of human services delivery, regardless of how that system is reconfigured.

The State of Illinois should utilize the existing network of Independent Service Coordination Agencies as the infrastructure for the system.

The State of Illinois should designate an independent state-level entity which is not involved in service delivery or paying for direct services to consumers to oversee the provision of service coordination in Illinois.

Consumers, families and advocates should represent the majority on the statewide entity and on the local boards of the independent service coordinators.

Initially, the State should identify all state and federal sources of funding which support service coordination to provide a basis for adequately funding independent service coordination in Illinois.

The state-level entity should work with independent service coordinators, consumers, families and advocates to develop state-wide standards for independent service coordination services.

The State should provide resources for a program of continuing education for independent service coordinators which would be configured by the state-level entry working in concert with consumers, families and independent service coordinating agencies.

The State should move to a more accountable system in which the customers of services control the dollars and the dollars follow individuals. This will positively influence the accessibility, flexibility and quality of services while containing costs and enhancing accountability.



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