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Exploratory Study of Barriers to Birth to Three Services:

Children with Disabilities and Special Health Care Needs in Washington State Public Programs

Executive Summary

Parents of Disabled Children: The presence of a moderately to severely disabled infant or toddler challenges every aspect of a family's life - the parental relationship, the welfare of siblings, the ability to earn a living and pay bills, the ability to pursue careers and other ambitions, the physical capacity of the family™s dwelling, relationships with extended family members and friends, and parental physical and emotional well-being.

Services System or a Patchwork: The array of early intervention services, marked by scarcity, is also seen as a patchwork of pieces; it is experienced by most parents as a maze rather than a system. Both parents and agency personnel report that it is easily possible to get "lost in the shuffle" and "fall between the cracks" among programs and never get "plugged in".

Gates to Service: While there are shortages of providers, money, and other resources in early intervention services in all counties, the major issue in services does not appear to be "availability". but "accessi/ms/rdability". The needed services, however scarce, are available, but there are multiple and complex gates to the services which are either shut or difficult to pass.

Parents Need IFRCs to Pass Gates: Interim Family Resources Coordinators (IFRCs) occupy a space somewhere between "parents" and "agency". As parents of children with disabling conditions, they provide some of the validation, information, support, planning, and referral to services and other families that parents seem to need.

Parents Need Other Parents: Most parents cannot survive or succeed in isolation but need the support of other similar parents. The "survivors" hang together, mutually supporting each other, rather than drawing on the larger resources of "normal" families in the community. They form a sub-culture, with powerful bonds formed from the reactions to and manner of surviving their situations.

Do the Early Intervention Services Serve the Family? A true family-centered approach to care appears to be the least developed aspect of care in the service system (for example, lack of respite care). Without this additional investment in the families who provide the skilled care to the infants and toddlers, the investment in medical therapy alone may not be sufficient to meet either service agency or family goals.

Local efforts at Better Coordination: While local innovations tend to strengthen certain aspects of service, they do not overcome basic system problems, such as categorical funding, low reimbursement rates, lack of sufficient numbers of providers, and lack of respite care.

Parents Fear Health Care Reform: Parents see health care reform, at both the state and federal levels, as providing

• a more medical than family-centered approach to disabilities,
• fewer options,
• fewer and tougher gatekeepers, and
• an overemphasis on cost reduction.

Families' Different Experiences with Early Intervention Services: The experiences of families with local early intervention services were significantly differentiated by geographic location, by poverty, and by being members of special populations. Location, poverty, ethnicity, and unique services systems combine in different ways to make the experience of some families very different from others.

Rural - Urban: Rural care is viewed by local informants as having the advantage of smaller numbers of children, highly visible in smaller communities with families informally referred to various services by a more personal interagency network. It is generally agreed that the weaknesses of rural care are the lack of specialist providers, lower skill levels and transportation problems.

Conversely, urban care is seen as providing more plentiful and varied services, but with more complex, formal relations among agencies and providers. Because of these complexities children may get lost and family needs may be overlooked. 

Poverty: Characteristics often associated with poverty include:

• geographic and seasonal mobility that impedes agency contacts, service information, and parent-to-parent supports that such families need; and
• different priorities and different language that contribute to families' distrust of agencies and providers' bias against poor families.

Hispanic Migrant, American Indian and Military Families: Cultural differences and unique services dedicated to special populations (migrant councils, Indian health services and military health care policies) complicate attempts at building common interagency networks. The consequences tend to be mutual suspicion, rejection and underservice.

The exception is migrant councils, which hire Hispanic paraprofessional advocates who specialize in screening, diagnosis, and referral and help maximize community- agency efficiency and coordination in delivery of services to Hispanic parents.

Modified: Thursday November 17 2005

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