Advocacy | Schools | Human Services | Family Support Groups and Networks |
  Financial Assistance | Health Coverage

Parents have a lifelong relationship with their child. They understand their child’s needs better than anyone else. They know when a care plan is working well. They know when a new plan is needed. Parents of children with chronic conditions need to learn to be advocates. Much of advocacy is teaching people about your child’s condition and needs. Children should also be taught to be advocates for themselves.

Another part of advocacy is being persistent in requesting a service or intervention. You may be told that your child does not need a particular intervention. You may be told you do not qualify for a service. You may wish to get another opinion. You may need to appeal a health plan’s denial of services. Tell health providers and professionals about your concerns. Try different approaches until you are satisfied.

Many parents report frustration when trying to relate concerns to health providers and professionals. A lack of information about the condition may be an issue. Know your rights. Know your resources. Advocacy groups may also be helpful. See the Resources and General Resources sections of this booklet for more information.

Remind those working with your child about treating the whole child. Some health providers and professionals focus on a particular goal for a child. They may not understand how that goal affects other needs of the child. For example, there may be difficulty fitting appointments or therapies into a school schedule. Parents may need to discuss their child’s intervention plan with school staff to meet both medical and educational goals.

Federation for Children with Special Needs
95 Berkeley Street, Suite 104
Boston, MA 02116-3104
617 482-2915
800 331-0688 (Massachusetts only)

Provides information and resources to improve communication between families and health professionals.

Schools

Each year when your child starts school, meet with teachers and the school nurse. Try to arrange a team meeting. It is best if everyone working with your child hears the same information. Discuss the following as appropriate.

• Names, titles, addresses and phone numbers of health providers and professionals. You may want to share medical reports with school personnel. You can give them copies of your medical reports. You can also sign a release of information form so the school can request copies.
• Your child’s knowledge of FASD
• Your child’s experience with FASD
• Your child’s ability to self-manage the condition
• A history of your child’s evaluations and services for FASD
• Health problems related to FASD
• Physical, intellectual and social development
• Medications at school and instructions on when and how they should be used
• Health needs at school
• A plan to inform staff of changes in your child’s condition, intervention plan, special needs or problems
• Emergency plans and telephone numbers
• An Individual Health Plan (IHP) which includes as appropriate:
  • Medication to be given at school, times, by whom and the correct use
  • Therapies and exercises to be done at school, times, location and by whom
  • Height and weight
  • Appetite and special dietary needs
  • Screening results such as vision, hearing and scoliosis
  • Activities which are limited or restricted
  • Activities which are encouraged
  • When to notify parents or health providers and professionals
  • Emergency plans and telephone numbers
• An Individual Education Plan (IEP) if your child receives special education services
  • How your child learns best, his or her abilities and what is difficult
  • A plan for absences, including receiving schoolwork at home and homebound services.
  • How the teacher can help all students accept individual differences

PACER Center (Parent Advocacy Coalition for Educational Rights)
4826 Chicago Avenue South
Minneapolis, MN 55417-1098
612 827-2966 (voice or TDD)
800 53-PACER
800 537-2237 (Minnesota only)
612 827-3065 (fax)

Coalition of a number of Minnesota disability organizations. Founded on the concept of parents helping parents. Strives to improve and expand opportunities to enhance the quality of life for children and adults with disabilities. Helps families, children and adults make informed decisions about education, training, employment and other services. Offers special programs for Minnesota parents, students and schools. Newsletters, booklets, written materials, videos and other resources are also available.

University of Minnesota
School of Public Health
National Resilience Resource Center
420 Delaware Street SE
Minneapolis, MN 55455
612 624-8919

612 624-5920 (fax)

Offers training for K-12 and early childhood programs. Provides teaching strategies for alcohol and other drug-exposed children. Technical assistance available to facilitate system changes for teaching programs.

Human Services

When a family member has a chronic condition, the family may feel financially strained. County social services departments provide information about financial resources to help with the cost of medical care. If you need assistance, call your county agency and ask for eligibility information. See the General Resources section of this booklet for more information.

When a family member has a chronic condition, the family may also feel emotionally strained. County social service departments may assist families with emotional and family concerns. Local mental health centers, psychologists and social workers can also help with problems which arise. Some organizations for FASD provide information, offer emotional support and help with advocacy. See the Resources and General Resources sections of this booklet for more information.

Offers professional education.

Family Support Groups and Networks

Sometimes it is helpful for parents to talk with other parents of children with FASD. Parents who have a child with the same condition can give encouragement and support. Their friendship and understanding can be helpful. They have an understanding that comes from experience. Family-to-family support often provides insight into options in managing the condition. This support may help reduce the stress and emotional concerns many families have. Family support groups can also provide a sense of community and strength for all family members. They can help avoid or cope with overwhelming feelings.

Support groups for teenagers or young adults with FASD can also be helpful. These groups provide the chance to talk to others with similar concerns. Sometimes support groups for persons with other chronic conditions are also available.

Informal support can also be found through health education programs. You may be able to start an informal group yourself with the help of a social worker or nurse. Check with your health providers or professionals to find out about groups or programs in your area. Your local hospital may also have information. See the Resources section of this booklet for more information.

Financial Assistance is available to families of children with special health care needs. Programs differ in coverage. Eligibility requirements also vary. This is a partial list of resources available.

Supplemental Security Income (SSI)
Social Security Administration
800 772-1213 (7 a.m. to 7 p.m., Monday through Friday)

Provides monthly cash payments to people who are age 65 or older or who are blind or disabled at any age. To be eligible, a child must meet both income and disability criteria. Some of the parents’ income and assets may be counted as the child’s. This may occur if the child is under age 18, is unmarried and lives at home. Most children who meet SSI eligibility criteria are also eligible for Medicaid (Medical Assistance). Medicaid provides assistance with the cost of doctor, dental and hospital bills.

Medical Assistance Program (MA)
Minnesota Department of Human Services
444 Lafayette Road
St. Paul, MN 55155-3848
651 296-3386
800 652-9747 (ask for Medical Assistance)

Medical Assistance helps families pay for medical care. Eligibility is based on income, assets and family size. The younger the child, the more income a family can have and still be eligible. If income is above limits, MA may still be able to pay part of the medical bills with a spend down. A spend down is like an insurance deductible. You will be responsible to pay part of the expenses and MA will pay the rest.

Children under age 19 who are blind or disabled may be eligible for MA based on their income and assets under the Tax Equity Fiscal Responsibility Act (TEFRA) option. MA counts only the child’s income and assets when determining eligibility. Parents may pay a monthly fee based on family size and income.

For a child to be eligible for MA under TEFRA, it must be determined that:

• The child is under age 19 and the State Medical Review Team (SMRT) has found the child to be disabled.
• The child needs care at home at the same level usually provided in a hospital, nursing facility or intermediate care facility for persons with mental retardation.
• The cost to the MA program for home care is not more than MA would pay for the child’s care in a medical institution.
• The child is living with at least one parent.

The State Medical Review Team (SMRT) certification process for TEFRA is different from that for adults because it includes the determination of a level of care.

Persons with disabilities may also qualify for MA benefits based only on their income and assets under a waiver program. Additional services are available under waiver programs and vary with the type of waiver for which the person is eligible.

For more information, contact the Human Services Agency in your county and ask for Medical Assistance.

85 East Seventh Place
P.O. Box 64822
St. Paul, MN 55164-0882
651 215-8956 (voice or TDD)
800 728-5420 (voice or TDD)
651 215-8953 (fax)

Provides medical care financing for Minnesota children with special health care needs from birth to age 21. Eligibility is based on income and family size. MCSHN has district offices in Bemidji, Duluth, Fergus Falls, Mankato, Marshall, and St. Paul.

MinnesotaCare
8 East Fourth Street
St. Paul, MN 55101 (street address)

444 Lafayette Road
St. Paul, MN 55155-2829 (mailing address)

651 297-3862 (metro)
800 657-3672 (non-metro)

State subsidized health care coverage for eligible uninsured Minnesota residents who meet program and income eligibility guidelines. Enrollees pay a premium based on income and family size.

Minnesota Comprehensive Health Association
P.O. Box 64566
St. Paul, MN 55164
651 662-5290 (metro)
800 531-6674 (non-metro)

Individual health insurance for Minnesota residents who are unable to obtain standard health insurance elsewhere.

Arc Minnesota
770 Transfer Road, #26
St. Paul, MN 55114
651 523-0823
800 582-5256
651 523-0829 (fax)
arcminn@mtn.org

Provides advocacy and support for people with developmental disabilities.

Arc Northland
201 Ordean Building
424 West Superior Street
Duluth, MN 55802
218 726-4725
800 317-6475
218 726-4722 (fax)

Provides an FAS curriculum, professional education, media promotion, family support and advocacy.

Association for the Care of Children's Health (ACCH)
7910 Woodmont Avenue, Suite 300
Bethesda, MD 20814
301 654-6549
301 986-4553 (fax)

Offers brochures, booklets, videos and a newsletter to help families and professionals access the health care system.

Minnesota County Social Services
Minnesota Department of Human Services
444 Lafayette Road
St. Paul, MN 55155
651 296-6117
651 296-5705 (TDD)

Offers support and assistance in finding community resources for families including intervention services, equipment, respite care and financial aid. Provides care coordination to families.

Courage Center
3915 Golden Valley Road
Golden Valley, MN 55422
612 588-0811
612 520-0410 (TTY/TDD)
612 520-0577 (fax)

Offers services to children and adults with speech, hearing and vision impairments and physical disabilities. Services also available to family members. Offers a Communication Resource Center, camping experiences, a transitional residence program, physical and occupational therapy, recreational and athletic activities and more.

Minnesota Departments of Health, Children, Families and Learning and Human Services

Provides services for children from birth to age 3 who have special health care needs or developmental delays. Operates through local interagency committees. Services may include respite care, physical therapy, occupational therapy, speech and language therapy, early childhood special education, special equipment, public health nursing services, family support activities and more. Call your local school district for more information.

Federation for Children with Special Needs
95 Berkeley Street, Suite 104
Boston, MA 02116-3104
617 482-2915
800 331-0688 (Massachusetts only)

Provides information and resources to improve communication between families and health professionals.

International Association for Medical Assistance to Travelers (IAMAT) -
USA Membership Office
417 Center Street
Lewiston, NY 14092
716 754-4883
519 836-3412 (fax)

Publishes a directory of English-speaking doctors around the world and provides health information for travelers. Fees for medical care are set at low rates. Membership and directory are free.

March of Dimes Birth Defects Foundation (MDBDF)
1275 Mamaroneck Avenue
White Plains, NY 10605
888 663-4637 (888-MODIMES) (information line)
800 367-6630 (to order multiple copies of brochures)
914 428-7100
914 428-8203 (fax)
resourcecenter@modimes.org

Promotes prevention of birth defects. Focuses on maternal and child health issues including low birth weight, infant mortality, prenatal care and maternal substance abuse. Offers public and professional health education and community service programs. Develops and distributes educational materials for health professionals and the public.

MedicAlert Foundation International
2323 Colorado Avenue
P.O. Box 1009
Turlock, CA 95381-1009
800 ID-ALERT (800 432-5378)

Makes identification necklaces and bracelets listing information such as diagnosis, medications and allergies. Keeps a brief medical record which is updated yearly for purchasers. In case of an emergency, the information is available for health providers.

Metro Center for Independent Living (MCIL)
1600 University Avenue West, Suite 16
St. Paul, MN 55104
651 646-8342
651 603-2001 (TTY)
651 603-2006 (fax)

Offers transitional programs to promote independent living including housing referrals and Personal Care Attendant (PCA) services. The Used Equipment Referral Service is a network between sellers, buyers and donators of used equipment. Equipment includes wheelchairs, ramps, lifts, hospital beds, walkers and more.

Provides medical care financing for children with special health care needs. Offers community-based clinics, technical consultation, information and referral. Conducts educational programs for families and health professionals. MCSHN has district offices in Bemidji, Duluth, Fergus Falls, Mankato, Marshall and St. Paul.

Minnesota Healthy People
c/o Pathfinder Resources, Inc.
2324 University Avenue West, Suite 105
St. Paul, MN 55114
651 647-6905

Offers chemical health education curriculum for 10th to 12th grade, professional education and advocacy.

PACER Center (Parent Advocacy Coalition for Educational Rights)
4826 Chicago Avenue South
Minneapolis, MN 55417-1098
612 827-2966 (voice or TDD)
800 53-PACER
800 537-2237 (Minnesota only)
612 827-3065 (fax)

Coalition of a number of Minnesota disability organizations. Founded on the concept of parents helping parents. Strives to improve and expand opportunities to enhance the quality of life for children and adults with disabilities. Helps families, children and adults make informed decisions about education, training, employment and other services. Offers special programs for Minnesota parents, students and schools. Newsletters, booklets, written materials, videos and other resources are also available.

Wilderness Inquiry
808 14th Avenue SE
Minneapolis, MN 55414-1516
Phone: 612.676.9400
TTY 612.676.9475
Fax: 612.676.9401
www.wildernessinquiry.org

Provides wilderness experiences for people with and without physical disabilities. Camping trips require interdependence and cooperation and are available for families with children and teens. Adults over 18 years of age may attend without family members.