I.
Federal and Wisconsin Children and Youth with Special Health
Care Needs Definition and Background Information
An estimated 15-18% of children in Wisconsin are children with special
health care needs. These children are birth to 21 years of age and
have a long term, chronic physical, developmental, behavioral, or
emotional illness or condition. The illness or condition:
(1) Is severe enough to restrict growth, development, or ability
to engage in usual activities.
(2) Has been or is likely to be present or persist for 12 months
to lifelong; and,
(3) Is of sufficient complexity to require specialized health care,
psychological, or educational services of a type or amount beyond
that required generally by children. Examples include cerebral palsy,
leukemia, diabetes, autism, attention-deficit hyperactivity disorder,
and severe asthma.
Recent improvements in the CYSHCN service system began in 1989
through amendments in the Omnibus Budget Reconciliation Act.
These amendments to Title V of the 1935 Social Security Act, as well
as the Maternal and Child Health Block Grant, require states
to provide family-centered, culturally competent, community-based, coordinated
care. As a result, in 1991, the Wisconsin CYSHCN Program conducted
a statewide need assessment in partnership with parents and providers.
A CYSHCN Implementation Work Group was convened in response to
the findings of the needs assessment. Using the recommendations
of this Work Group as well as others, the Wisconsin CYSHCN Program
articulated a new program vision. This vision reflects a change
from the provision of direct financial assistance or payment
of medical services to the development of a community -based
systems approach to services.
The philosophy and principles of this vision of a systems approach
are:
- Children are best served within their families.
- Children and families are best supported within the context
of their community.
- Families will have convenient access to care coordinators.
- Collaboration is the best way to provide comprehensive services.
- Family perspectives and presence must be included in all
aspects of the system.
II. Regional Children and Youth with Special Health Care Needs
(CYSHCN) Centers
The Wisconsin Division of Public Health, Children and Youth with
Special Health Care Needs (CYSHCN) Program beginning in January
2000 awarded contracts to establish CYSHCN Centers in each of the
five Division regions. The Centers increase the capacity of local
communities to serve families. The five Centers will work together
to form a statewide, integrated system for children with special
health care needs and their families. The Centers began to offer
services to families and providers in September 2000, after an
initial period for infrastructure development and start-up activities.
The goals of the Regional CYSHCN Centers are to:
(1) Provide a system of information, referral, and follow-up services
so all families of children with special health care needs and providers
have access to complete and accurate information. Referrals will
be made to various agencies and programs, as appropriate, based
on the information requested and need for follow-up services. Examples
include local health departments, county and tribal human/social
services, Social Security Administration, schools, Child Care Resource and Referral agencies, childcare providers, various
local community-based organizations, WIC, Birth to Three, Family
Support, and Independent Living Centers.
(2) Promote a parent-to-parent support networks to assure all families
have access to parent support services and health benefits counseling.
(3) Increase the capacity of local health departments and other
local agencies, such as schools, to provide service coordination.
(4) Work to establish a network of community providers of local
service coordination.
(5) Initiate formal working relationships with local health departments
and establish linkages for improving access to local service coordination.
