Developmental Disabilities Leadership Forum: Leadership Perspectives in Developmental Disability: An on-line Journal for Consumers, Professionals, Family and Friends
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Volume 1 , Issue 1 Date: Summer, 2000 Topic: Advocacy

Advocacy Strategies: Health Care and Managed Care
- Personal and Collective Approaches
by Betsy Anderson


Managed care has been growing tremendously and more than 177 million Americans are covered now by some form of managed care – health maintenance organization (HMO), preferred providerorganization (PPO), or point of service plan (POS).

Managed care is a way of financing – paying for – and delivering health care for a certain price, using a network of specific providers and services. In this relatively new form of care, people with special needs were previously not included (“carved out”) because there was concern about whether this form of delivering care, with its emphasis on cost cutting, would be good for them. Now, however, many families are being offered, encouraged, or even required to choose managed care plans for themselves or their children with special health needs. Managed care was initially developed for those considered “healthy;” those with disabilities have been newer additions. As of 1999, 32 states have included children eligible for SSI and Medicaid in managed care programs.

Health care - important for everyone – is especially critical for those with disabilities or special health needs. The purpose of this article is to suggest strategies to understand and address issues in managed care – some that can be used by individuals, acting on their own; others that can be more effectively used by consumer organizations or coalitions. Everyone’s experience with managed care is relatively limited. We must work individually as well as with others to address problems and to shape a health care system that truly works for all.

Approaches Individuals Can Carry Out

1.Share information.

Talk with others about your health care coverage and managed care experiences – talk about what’s good and working well and about what’s difficult or problematic.

2.Think carefully about any choices you have about health plans.

Be as aware as you can of your child (and family’s) current and future health care needs. Discuss these with health caregivers who know your child best.

3.Keep track of your health records and bills.

There are many and varied ways to organize. Try to have one place where you put things. This is essential if you want to follow up later on questions or problems.

4.Pursue questions and issues up the ladder of command at your health plan. Be persistent!

Follow up on anything you think should be covered. - the first person you reach is not always the one who can resolve things. Children’s disabilities are usually rare and their situations are apt to be different from “the norm” – staff at the plan may not be familiar with them.

5. When you can, put your requests in writing.

(You won’t always have time but when you can, do.)

6.Be prepared to negotiate.

Consider ahead of time what you’d really like. . . and what you’re willing to live with.

7.Identify others. . .

If you’re making a request you think your plan may not want to cover, try to identify others who have received this service or gotten what you’re asking for. Find out what strategies they used - ask your parent group friends, physician or clinic contacts, check the Internet, etc.

8.Appeal if you must.

Use the grievance procedures all health plans - including HMOs, Medicaid - have.

9.Identify others who have gone through the appeal process – whether successfully or not - so you can learn how it worked for them.

10. Contact the state Division of Insurance or Group Health if you think there may have been a procedural error.

11. Communicate with whoever purchases your plan (employer, union, etc.)

Make sure they know what you’re pleased with and what is not being covered well or is difficult to access.

12. Communicate with any advisory board associated with your health plan.

Discuss your experience or point of view, in person, by letter, etc. Consider becoming a member of your health plan’s advisory board.

13. Keep your child’s health care providers informed about any service issues for your child.

They should help you advocate with the plan to receive needed care. Your caregivers may serve on boards, be part of systems and services allocation, planning, etc. They may also know of other sources of funding. Or alternative forms of care and treatment, if this is feasible.

14. Use your case manager as an ally.

Use this person to discuss and pursue any questions or difficulties you are having with your child’s care and plan. If you don’t have a case manager. . . get one! (Contact the Department of Mental Health, Mental Retardation, or Public Health.)

15. Discuss issues, problems, questions - and successes - of your child’s care with your state health, mental health, mental retardation departments.

Part of their roles is to ensure the health of children with special needs. They may be able to provide information, case management, advocacy services - and sometimes even $$. They are also charged with keeping track of what’s working and what’s not working for children and families.

16. Discuss your issues and experiences with state and federal legislators.

Why? Sometimes they can pull strings or use other contacts to assist you. . Also, it’s important to add to their information. State and federal legislators are considering the best ways to oversee and regulate managed care.

Group Advocacy Approaches to Managed Care

1. Put health care - access, delivery, financing, and quality - on your group’s agenda.

Make it a topic for frequent and easy discussion.

2. Provide current written materials and resource lists in newsletters and at meetings.

3. Invite speakers with a variety of perspectives to keep your group up to date on health care issues and services.

4. Collect and share ideas, issues and strategies abut health care and services, plans, etc.

· information about problems any in your group are experiencing
· information about successes
· information about strategies any have found useful

5 .If the number or kind of problems warrant it, develop specific plans to address them.

6 .Use statistics to substantiate issues or problems.

Collect whatever statistics you can from your group (how many, how much, etc.)

Use statistics others have collected to help your cause.
  • The recent Family Voices/Brandeis survey of 2,200 families’ experiences with health care for children with special needs and the report of family interviews with managed care organizations are available on the Family Voices Website –
  • The Center for Health Services Research and Policy (CHSRP) at the George Washington University of School of Public Health:
  • Negotiating the New Health System: A Nationwide Study of Medicaid Managed Care Contracts – 3rd Edition, published June, 1999.
  • CHRSP Purchasing Specifications Project. A series of specifications available or in development for: Pediatrics, Medicaid Services, SCHIP Services, Children with Special Health Care Needs, Child Development, Children with Mental Illness and Addiction Disorders, Children in Foster Care.

7 .Collect stories from individuals and families to help others understand what families or individuals are experiencing.

If you’re using actual names or recognizable circumstances, get permission. When issues are complicated it helps to put a human face on the picture.

8 .Identify or develop vehicles to communicate about these issues - problems, strategies, and , importantly – successes!

9. Work directly with health plans to address issues and share information.

Learn how plans are organized, the specific people or vehicles within plans to address issues. Share resources and information from your group or those you represent. Be part of training specific staff, especially those in case management departments. Also, learn about associations of managed care 0rganizations.

10. Work with state agencies to address issues.

Many state agencies are charged with safeguarding care for specific populations - Departments of Mental Health, Mental Retardation, Public Health and MA Rehabilitation Commission. Also, importantly, the Division of Medical Assistance develops contracts for care with many managed care organizations for those with disabilities. Be part of assuring that these contracts contain the safeguards they should, ensure that consumers know what these safeguards are, and that contracts are monitored appropriately.
11. Monitor and/or initiate legislation - state or federal.

Discussion of consumer safeguards in health care is an important topic right now.

12. Media Strategies
  • publicize issues and problems
  • publicize successes families have had

13. Join with advocacy groups in your area or state to address issues.
  • Consumer Organizations – especially Health Care for All
  • Hospital Associations and Professional Groups

14 .Key Opportunities right now:
  • Consumer Safeguards
  • Quality/outcome measures
15. Work to ensure that children and adults with disabilities and special needs receive the health care services they need and deserve!

Betsy Anderson is a longtime advocate for children and one of the founding parents of the Federation for Children with Special Needs. Her interests have been in health, parent support and information, and parent/professional collaboration. She initiated work in health at the Federation and worked to achieve the first funding for parents from the federal Bureau of Maternal and Child Health. She works primarily on national health policy issues for Family Voices at the Federation. She is the parent of three, now grown, children, one of whom was born with significant disabilities.

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