Minnesota Title V MCH Needs Assessment Fact Sheets

Children with Special Health Needs

Families Receive Needed Services

Summer 2004

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Size of the Problem

The health and well being of children are inextricably linked to their parents' physical, emotional and social health, social circumstances, and child rearing practices.[1]

Approximately 35,375 families of children with special health care needs (22%) have a need for family supportive services such as respite care, mental health services and/or genetic counseling.[2] An estimated 11,928 families of children with special health care needs in Minnesota have one or more unmet needs for family support services.

  • Over 4,000 families who needed help coordinating care for their child didn't receive needed help;
  • 4,500 families needing respite care to provide short-term relief from care giving responsibilities can't get it;
  • More than 7,100 families who need mental health or counseling services because of their child's health, couldn't get those services;

The Children/Family Survey of the Health Services Research Institute and the National association of State Directors of Developmental Disabilities Services[3] asked families of Minnesota children with mental retardation or developmental disabilities about MR/DD services. The results include:

  • 40.5% agree that the services offered by their MR/DD agency meet their family's needs all or most of the time.
  • 47.7% of the families do not have a case manager or staff to help them figure out what they need as a family to support their child.
  • 35% only some of the time have a case manager or staff talk to them about options to meet their families needs; 15% never have someone talk to them about options to meet their families needs

The onset of a chronic illness may have wide-ranging effects on a family system. For some, it can be a source of considerable emotional strain, whereas for others, it may foster interpersonal growth and lead to enhanced relations between family members.[4]

From a practical perspective, however, we know that among Minnesota families of children and youth with special health care needs:[5]

  • An estimated 83,000 receive health care services at home. Health Care that is provided by their families.
  • 12,209 of those children require at least 10 hours per week of care at home and
  • 7,100 children require more than 20 hours of care per week provided by their families;
  • Family financial problems due to the child's health care needs are reported for an estimated 31,355 (19.5%) of the children;
  • 25% of children with special health needs have a parent who cut their hours at work to care for their child at home;
  • Approximately 16,625 children with special health needs have a family member who stopped working due to the health care needs of the child.

These more practical considerations delineate only a few of the ways in which having a child with a chronic illness or disability can impact parents and siblings.

Seriousness

Although not all families of children with special health care needs require additional support services, some do. Of those who need support services, Minnesota has a higher percentage of families who can't get them than most other states. Only Oregon, Kansas and the District of Columbia have higher percentages of families with unmet needs for family support services than Minnesota.

In Minnesota, families without health care coverage are far more likely to have unmet need for support services than those who are insured.

Families of children with functional limitations are much more likely than those whose conditions are managed by medications alone to have unmet needs for service.[6]

Mothers of children with physical disabilities have a higher incidence of low back pain (71.1%) than mothers of children with chronic illnesses (43.5%). Increased depression in mothers is associated with the presence of low back pain among mothers of children with physical disabilities.[7]

Maternal depressive symptoms have been found to be strong predictors of emergency department visits in children with asthma. Researchers suggest that maternal psychological distress diminishes the mother's ability to cope with her child's asthma and is a marker for greater negative impact of the child's illness on the family. The conclusion is that improved maternal mental health would not only improve the quality of life, but may also decrease unnecessary emergency department visits.[8]

Models suggest that an individual's adjustment to chronic illness is influenced by a number of variables including the characteristics and resources of the family.[9] A number of studies have found significant relationships between maternal adjustment measures such as anxiety and depression and child behavior problems in children with special health care needs suggesting that failure to address mental health issues in parents adversely impacts child functioning at home, school and in the community. Research also finds that having an intact biological family decreases the risk of behavior problems in children with diverse chronic illnesses, suggesting the importance of attending not only to the child's medical needs, but to the broader needs of the child-family system including services that support the parental relationship.

Interventions

Minnesota families of children with developmental disabilities or mental retardation overwhelmingly agree that services and supports help keep their children at home (71.9%) and that family supports improve their ability to care for their child (65.3%).[10]

The Family Support Grant Program though the Minnesota Department of Human Services

provides state cash grants to families of children with mental retardation or a related condition of up to $3000.00 per year. The goal of the program is to prevent or delay the out-of-home placement of children and promote family health and social well-being by facilitating access to family-centered services and supports. The grant must be spent on services and items that are directly related to caring for the child with a disability. Only expenses that are over and above the normal costs of caring for the child if the child did not have a disability may be covered.

The Consumer Support Grant program is a state-funded alternative to Medicaid-reimbursed home care. This program specifically includes the home care services of home health aide, personal care assistant and private duty nursing services. Medicaid is a service system that mixes together both state and federal money. The Consumer Support Grant Program allows a recipient to convert the state portion of payments for specific home care services into a cash grant. Eligible participants receive monthly cash grants to replace fee-for-service home care services payments. With county assistance, consumers can manage and pay for a variety of home and community-based services. The CSG Program provides consumers with greater flexibility and freedom of choice in service selection, payment rates, service delivery specifications and employment of service providers. Parents, spouses, family members, trusted neighbors or friends can be paid for service, as well as employees of traditional home care provider agencies. To be eligible for CSG, a person be a recipients of or eligible for Medical Assistance and be eligible to receive home care services from the Medical Assistance Home Care Program. In addition, CSG program participants must demonstrate limitations in everyday functioning, such as, self-care, language, learning, mobility, self direction, capacity for independent living and economic self-sufficiency and require ongoing supports to live in the community.

Minnesotans with disabilities or chronic illnesses who need certain levels of care may qualify for the state's home and community-based waiver programs. Medicaid home and community-based service (HCBS) waivers afford states the flexibility to develop and implement creative alternatives to placing Medicaid-eligible persons in hospitals, nursing facilities or Intermediate Care Facilities for Persons with Mental Retardation or Related Condition (ICF/MR). HCBS waivers allow states to put together various service options that are not available under regular Medical Assistance. These service options are available to persons in addition to services covered by MA. Generally, these services are targeted to people with specific needs or diagnosis.

Status

As efforts of advocacy organizations and the decisions of court cases began to dismantle the institutional model of caring for persons with developmental disabilities, it became clear that it is possible to support people with significant disabilities to live in the community. As services became available to support adults in the community, the irony that families were not supported to stay together became clearer.

There were calls for investing public money in supporting the family rather than replacing it. Policymakers were called on to provide some form of community services and supports to help "alleviate the stress of raising a child with a disability." We began to see the growth of respite programs, parent counseling and other support services.[11]

Most family-support programs are available to individuals with functional limitations or those with only the most severe chronic illnesses. Gaps have continued to exist for families of children with moderately disabling conditions and those who do not meet financial eligibility criteria for the programs.

As state budgets have come under pressure, so too have family-focused support programs. Waiting lists for services have grown, fees families pay for services have increased, and the types of services eligible for reimbursement have come under increasing scrutiny at the very least and been eliminated at most. Some programs, such as the MCSHN Treatment Program, which paid for medical care, medically related camping experiences for children as well as family education, have been eliminated altogether.

Public health provides leadership in infrastructure and capacity building of the community around health issues. These skills can be used to develop, support and maintain a system for supports for families and their children with special needs.

Public health conducts an assessment of community needs and resources. The problem area to be assessed is the lack of availability of support services child/youth/their families/young adults with disabilities. Through a needs assessment process the problem areas for this population will be identified leading to the development of goals, strategies and a community response to address this problem. The activities may include education of the community about the needs of this population and organizing the community to meet the needs of this population.

Under the assurance core public function, public health has a "safety net" responsibility to assure that every child/youth/their families/young adults is connected to or has access to the services they need. On a system level, public health assures that gaps in community services are identified and solutions developed which are population based.


1. Report of the Task Force on the Family. Family Pediatrics. Pediatrics 2003; 111 (6); 1541-1571.
2. Centers for Disease Control and Prevention, National Center for Health Statistics, State and Local Area Integrated Telephone Survey, National Survey of Children with Special Health Care Needs, 2001. April 28, 2003.
3. Core Indicators Project. Child/Family Survey Summary Report 2000. National Association of State Directors of Developmental Disabilities Services and Human Services Research Institute. 2001.
4. Miceli, P., Rowland, J., Whitman, T., (1999) In Whitman, T., Merluzzi, T., White, R (Eds) Life-span Perspectives on Health and Illness. (chapter 9).Mahwah, MJ; Lawrence Erlbaum.
5. Centers for Disease Control and Prevention,National Center for Health Statistics, State and Local Area Integrated Telephone Survey, National Survey of Children with Special Health Care Needs, 2001.
6. Ibid
7. Tong, H., Haig, A., Nelson, V., Yamakawa, k, Kandala, G., Shin, K., Low Back Pain n Adult Female Caregivers of Children with Physical Disabilities. Archives of Pediatrics and Adolescent Medicine. (137) 1128-33. Nov 2003.
8. Bartlett, S., Kolodner, K., Butz, A., Egglestion, P., Malveauz, F., Rand, C., Maternal Depressive Symptoms and Emergency Department Use Among Inner-city Children with Asthma. Archives of Pediatrics and Adolescent Medicine. 2001;155:347-353.
9. Miceli, P., Rowland, J., Whitman, T., (1999) In Whitman, T., Merluzzi, T., White, R (Eds) Life-span Perspectives on Health and Illness. (chapter 9).Mahwah, MJ; Lawrence Erlbaum.
10. Child/Family Survey Summary 2000.
11. Curriculum Highlights Supported Living/Home of Your Own. Partners In Policymaking. www.partnersinpolicymaking.com/curriculumliving.html [Attn: Non-MDH Link] Accessed 8/1/04.