Minnesota Title V MCH Needs Assessment Fact Sheets

Children with Special Health Needs

Parents As Decision Making Partners

Summer 2004

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Size of the Problem

Family Voices, a national grass roots organization states that families face a confusing maze of services that are not well coordinated. These problems are often compounded for families living in poverty, in rural areas, and in disintegrating urban neighborhoods.[1]

In order for services to be most effective, parents of children with special health needs must be involved both in the design and implementation at the individual, community and systems levels.

Parental involvement was a key feature of the design and implementation of services for infants and toddlers with disabilities at the state and local level.

The families of an estimated 18,471 children with special health needs in Minnesota are never or only sometimes helped to feel like a partner in their child's care by health care professionals.[2]

63% of families of children with special health needs agreed that the health care professionals involved with their child always helped them feel like a partner in their child's care.[3]

Seriousness

Active partnerships between families and professionals is the cornerstone of family-centered care, supporting families as they participate as integral partners in working with their child's health care professionals in making informed decisions.[4]

Families of children with functional limitations are less likely to feel like partners in their children's care than those without such limitations.[5]

Poor minority children are more likely to have chronic illnesses or disabilities. School records and teacher reports suggest that they are more likely to be categorized as children with special health care needs. Poor children from culturally and linguistically diverse backgrounds:

  • are more likely to use fewer outpatient services;
  • have more hospital admissions;
  • are significantly less likely to receive medication for their chronic conditions;
  • and use fewer health resources.[6]

A large study of family experiences in a tertiary care indicated that parents' overall assessments of care are influenced most by the parents' communication with hospital staff and the extent to which staff and parents are engaged in partnership.[7] Child health providers also need more resources, information and support.

Interventions

A high level of collaboration with families was more dependent on the care providers' attitudes and the relationships they established with the families of infants in their units than on the physical facilities.[8]

Providing a medical home for all children with special health needs is a federal core performance measure for the Maternal and Child Health Block grant and is listed as an objective in the Healthy People 2010 initiative. A specific element of a medical home is that providers acknowledge the expertise of parents in caring for their children.

Evaluation of Parent Advisory Groups established in 4 community-based pediatric clinics found they were successful in that physicians gained awareness of the common needs of families of children with chronic conditions (8.43 on a 1 to 10 scale with 1 being no benefit) and in helping them to find ways to be more collaborative with these children and their families (7.29).[9]

The Action Plan for Improving Care for Children with Special Health Care Needs from Diverse Cultural Backgrounds provides a blueprint for communities, providers, and families to follow in designing and implementing services and systems.[10]

Part C Early Intervention for Infants and Toddlers with Disabilities is a model of parent partnerships in the development and implementation of a program for children with special health care needs. At the systems level, families are an integral part in the design and ongoing system implementation. At the individual level, families are acknowledged as the constant in their children's lives and recognized for their expertise related to their child's strengths and needs. All services and supports accessed through early intervention are designed to support the family's role in enhancing their child's development.

Schools of public health, medicine, nursing, social work and education, as well as other related health professional schools should be encouraged to incorporate family/professional partnering and cultural competency.[11] The Parents As Teachers Program at the University of Minnesota Medical School pairs pediatric residents with families of children with special health needs. Residents spend time with the child and family in the family home or in community activities. Both resident and parents attend a debriefing session co-facilitated by a pediatrician and parent facilitator.

Family Service Collaboratives are developing systems of care for children and families based on family participation in decision-making about care for children.[12]

"Partners is Policy Making" sponsored by the Minnesota Governor's Council on Developmental Disabilities, is an internationally known program that assists consumers and their families in understanding the policy-making process. Families develop concrete skills to use in systems change initiatives.

Family Voices and other advocacy organizations provide support and education to families of children with special health needs and are involved in policy development at the state and federal level.

Status

Advocacy organizations such as PACER, ARC, and Family Voices provide education support and outreach to raise community awareness and participate in policy development at all levels.

Parent participation in decision-making at all levels and satisfaction with services are core outcomes for children with special health care needs established by the US Maternal and Child Health Bureau.

The Minnesota Chapter of the American Academy of Pediatrics, Minnesota Department of Health and PACER Center jointly sponsor the Medical Home project. This is designed, in part, to increase family-physician collaboration in quality improvement efforts within the Medical Home for children with special health care needs.

The Minnesota Department of Health, Children with Special Health Needs Section includes a parent advisory committee and might serve as a model for local health agencies seeking to enhance their partnerships with parents of children with special health needs.

Despite the activity surrounding parent partnership at the individual and policy levels, the expectation has yet to be institutionalized in most arenas affecting children with special health needs and their families including those with differing cultural backgrounds.


1. McPherson, Merle MD, MPH, Gloria Weissman, and Bonnie Strickland, PhD. "Parents as Partners in The Medical Home: A Family- Professional Partnership". (2002).
2. SOURCE: National Health Interview Survey of Children with Special Health Care Needs
3. ibid
4. All Aboard the 2010 Express. U.S. Department of Health and Human Services (2001).
5. National Health Interview Survey of Children with Special Health Care Needs.
6. Evans, T., Garwick, A.,Rinehart, P.M. "Improving care for children with special health care needs from diverse cultural backgrounds: An action plan". Health Resources & Services Administration. U.S. Public Health Service. 1999.
7. Homer, CJ., et al. "Quality of Care at a Children's Hospital: The Parents' Perspective". Archives of Pediatric and Adolescent Medicine. Vol 153, 1123-1129. Nov 1999.
8. Saunders RP, Abraham MR, Crosby MJ, Thomas K, Edwards WH. (2003). Evaluation and development of potentially better practices for improving family-centered care in neonatal intensive care units..Pediatrics. 111(4 Pt 2):e437-49.
9. Young, M., McMenamy, J., Perrin, E. "Parent Advisory Groups in Pediatric Practices". Archives of Pediatric and Adolescent Medicine Vol 155. 692-698 (reprinted). June 2001
10. Evans, T., Garwick, A.,Rinehart, P.M."Improving care for children with special health care needs from diverse cultural backgrounds: An action plan". Health Resources & Services Administration. U.S. Public Health Service. 1999.
11. Ibid. All Aboard
12. Mendoza, Amalia and Brown, Curtis. An Integrated System of Care for Minnesota's Children and Families: Report on Family Services and Children's Mental Health Collaboratives. Children's Mental Health Division, Dept. of Human Services (2000).