Minnesota Title V MCH Needs Assessment Fact Sheets

Children with Special Health Needs

Services Are Organized for Easy Use

Summer 2004

Printer-Friendly Version (PDF: 52KB/4 pages)

Size of the Problem

Approximately 65,000 families of children with special health needs in Minnesota (27%), find the system of services and supports difficult to use [1].

70% of families of children with special health needs involved in the MCSHN Treatment Program responding to an annual survey (n=1981) indicated a need for information on services available to their children; 50% indicated that more information on services is a high or very high need [2].

49% of families of children with special health needs indicate a need for assistance in accessing services for their children with special health needs; 20% indicated this as a high or very high need [3].

Seriousness

Poorly organized and poorly coordinated systems and services result in inefficient, sometimes duplicative and therefore more costly services. They are ineffective in that gaps in services that might enhance individual or family functioning are not identified in a timely manner, if at all.

The amount of time and energy spent by parents coordinating services for their children decreases the time and energy that could be spent with the child. This unnecessarily increases stress on families living already stressful lives.

Minnesota ranks 33 rd nationally in community-based services being organized so they can easily be used by families of children with special health needs [4].

Families of school-aged children receiving special education services are less likely to find organized, easy to use systems than the population of families of all school aged children (58%).

Families whose children have been involved in the coordinated interagency Part C system for their children with disabilities describe their transition from Part C to school entry as the "kindergarten cliff." At kindergarten, they lose access to a coordinated interagency system, process, team and plan. Their child may still be receiving services from multiple agencies but they have lost the coordinated interagency planning process and have separate processes, services, and plans. This results in duplications or gaps in such things as assessments, services, etc. and multiple meetings with sometimes competing or conflicting goals or outcomes. This puts the family in the position of planning and coordinating services across these multiple agencies.

Interventions

At the request of families with children with disabilities, state legislation was passed to expand the coordinated interagency system from birth to three, up to age 21. The purpose of this legislation is to make a seamless coordinated interagency system for children and their families.

In 1998, Minnesota passed two statutes, 125A.023 and 125A.027, known as the Interagency Services for Children with Disabilities Act. This system is now formally referred to as The Minnesota System of Interagency Coordination (MnSIC). The purpose of this act is to develop and implement a coordinated, multidisciplinary, interagency intervention service system for children ages birth to 21 with disabilities.

The Coordinated Interagency Services legislation requires that the governor appoint a state interagency committee to:

  • Identify and assist in removing state and federal barriers to local coordination of services provided to children with disabilities.
  • Identify adequate, equitable and flexible use of funding by local agencies for these services.
  • Develop guidelines for implementing policies that ensure a comprehensive and coordinated system of all state and local agency services
  • Develop, consistent with federal law, a standardized written plan
  • Identify how current systems for dispute resolution can be coordinated and develop guidelines for that coordination.
  • Develop an evaluation process to measure the success of state and local interagency efforts in improving the quality and coordination of services to children with disabilities.

In addition to the two first bullets above, local school boards and county boards (social services and public health) are to:

  • Implement policies that ensure a comprehensive and coordinated system of all state and local agency services.
  • Use a standardized written plan for providing services.
  • Access the coordinated dispute resolution system and incorporate the guidelines for coordinating services at the local level.
  • Use the state developed evaluation process to measure the success of the local interagency system.
  • Develop a transitional plan for children receiving services from Part C.
  • Coordinate services and facilitate payment for services from public and private institutions, agencies and health plan companies.
  • Share needed information consistent with state and federal data practices requirements .

In addition to the legislation mandating interagency coordination local areas will benefit and have asked for training and technical assistance by the state to include: Team facilitation and mediation skills, Best Practices in Service Coordination, Funding Strategies, The design of a local system, governance, data practices, etc. The experience of Part C has demonstrated the need for and value of state leadership and assistance to local areas.

Minnesota local public health agencies have had a long standing relationship and experience with coordinated interagency systems through their participation with IDEA - Part C and the local IEIC's (Interagency Early Intervention Committees). Public health has played a significant role in the design of the Part C system that supports children, birth to three, as well as providing service coordination and child find activities. Some public health agencies are also involved in Children's Mental Health and/or Family Service Collaboratives and are already involved with the Interagency System for Children with Disabilities Birth to 21.

This history reinforces the importance of the role of public health in interagency systems. This interagency role has been a public health responsibility every since the advent of health care reform and the switch from providing direct health care services to core public health functions.

The roles/core public health functions in the coordinated interagency system include:

1. Infrastructure and capacity building

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 an interagency coordinated system for child/youth/their families/young adults with disabilities. Examples of this include:

  • Assuming a leadership role in the development of governance agreement or joint powers agreements, and
  • Development of policies and procedures to support the day to day activities of the system, which outlines what is to be done, by whom and under what circumstances.
  • Enticing stakeholders to the decision table to assure interagency agreement and sharing of responsibilities and resources across the system.
  • Garnering community support for coordinating activities.

2. Assessment

Public health has the skills and knowledge to conduct an assessment of community needs and resources on behalf of the interagency coordinated system. The problem area to be assessed is the lack of access to interagency coordinated system/services for 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. One of the questions to be assessed is: Are community-based service systems organized so families can use them easily [a]? 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.

3. Assurance

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

As part of the assurance function one important public health role is child find which includes: public awareness, outreach, screening and referral. Child find is a role for public health and an activity performed for and on the behalf of the interagency coordinated system for child/youth/their families/young adults with disabilities and their families to assure early identification and referral to appropriate services in a timely manner.

Public health has a broad responsibility: to improve the health status of the population through early identification and intervention. This includes activities to provide outreach to all children/youth/their families/young adults to assure that they are connected to the services they need. Other providers have a narrower child find activity which is to identify child/youth/their families/young adults who are eligible to receive only their services.

Even though the target population identified for the Coordinated System for Children With Disabilities is defined as those children who are first eligible for special education and receiving services from at least one other public agency, public health has a broader definition of and responsibility to all children including those with special needs/disabilities. When a system is designed to meet the needs of the disability population identified in the coordinated system, it will also have the potential of serving a broader population of child/youth/their families/young adults with disabilities with special needs and their families.

Public health public awareness activities and outreach fosters knowledge of an issue in the general public and what can be done about it. It also means locating populations of interest or at-risk and providing information about the concern, what can be done about it and how services can be obtained. Screening and referral identifies individuals with unrecognized health risks or asymptomatic diseases or conditions what can be done about it and how services are obtained. It also means assisting in the identification of and access to resources to prevent or resolve concerns with children/youth/their families/young adults, groups and organizations and communities.

Status

Clearly, families of children with special health care needs value systems and services that are well organized and easy to use.

Minnesota has a history of interagency coordination of services for children birth to 3 and for youth 14-21 at both the state and local levels. However, there is much variability across the state. Prior to this legislation minimal coordination activity existed for children aged 3 to 13.

Some areas across the state have been successful in building on current collaborative relationships to establish a local interagency system birth to 21, others have not been as successful and continue to need support, training and technical assistance.

The US Maternal and Child Health Bureau has identified children with special health care needs that services will be organized in a way that families can use them easily as one of its six core outcomes.


a. Maternal and Child Health Bureau 10 Year Plan Goal #5.
1. SOURCE: National Survey of Children with Special Health Care Needs.
2. SOURCE: Minnesota Children with Special Health Needs Family Survey. 2000-2003.
3. ibid
4. SOURCE: National Survey of Children with Special Health Care Needs.