Exploratory Study of Barriers to Birth to Three Services

This paper suggests the presence of a moderately to severely disabled infant or toddler will challenge every aspect of a family's life and that the array of early intervention services – marked by scarcity – can be viewed as a patchwork of pieces 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." Major issues are shortages of providers, money, and other resources in early intervention services in all counties. At the local level, innovations tend to strengthen certain aspects of service, but do not overcome basic system problems, such as categorical funding, low reimbursement rates, lack of sufficient numbers of providers, and lack of respite care. 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. Most parents cannot survive or succeed in isolation but need the support of other "similar" parents.