A needs assessment was conducted to gain a better understanding of the needs and concerns of families of children with special health care needs enrolled in MassHealth Managed Care and primary care clinicians (PCCs) in the MassHealth Primary Care Clinician Plan. Surveys, which focussed on issues identified by the project Advisory Committee, were utilized to identify the needs and concerns of families and PCCs. Focus groups were then held in order to clarify and enhance survey data. Focus groups also provided a forum in which participants could generate ideas and recommendations for potential interventions to address their concerns. The results of the assessment were used to guide the development of appropriate interventions to enhance the care of children with special health care needs in MassHealth Managed Care.
Criteria Used for Defining MassHealth Population of Children with Special Health Care Needs
In order to identify the population of children with special health care needs enrolled in MassHealth Managed Care, the following criteria were used: Children with special health care needs were defined as those children aged 18 and under who were enrolled continuously (with no more than a 45 day break in eligibility in FY 94) in the MassHealth Managed Care program, and who were either (1) receiving SSI or (2) receiving AFDC and had at least one Early Intervention claim in FY 94.
Surveys were sent to a random sample of families of children with special health care needs enrolled in MassHealth and PCCs in the MassHealth PCC Plan. All families were sent both English and Spanish versions of the survey. Three hundred twenty-one family surveys (including 67 Spanish versions of the survey) and 285 PCC surveys were returned. This represents a 32% and 31% response rate, respectively. Analysis of family survey data did not reveal any significant differences in the responses of English and Spanish respondents. Analysis of PCC survey data did not reveal any significant differences in satisfaction or needs between PCCs with high and low proportions of children with special health care needs in their practice, or between PCCs in different practice types.
Four family and two PCC focus groups were conducted. The family focus groups were held in Lawrence, Boston, Hyannis and Holyoke. The Holyoke focus group was conducted in Spanish. The PCC focus groups, which were comprised of PCCs from a variety of practice types and cities and towns throughout Massachusetts, were conducted as conference calls.
DESCRIPTION OF SURVEY RESPONDENTS
321 families completed the family survey (32% response rate). The mean age of respondents' children was 9.7 years, with 2.5% under 3 years of age and 52% between 3 and 10 years of age. There was no significant difference in age or race between respondents and non-respondents. When asked to describe their child's current special health care needs, 6% described the need as a physical limitation only, 12.5% described the need as one that requires help with every day activities, and 33% described the need as one resulting in difficulty with social relationships only. The remaining respondents reported a combination of different types of needs.
285 PCCs completed the PCC survey (31% response rate). 59% were from group practices, 17% were solo practitioners, and 24% were from outpatient departments or community health centers. Of the 285 respondents, 194 were eligible to complete the entire survey. (91 reported that they either did not provide primary care for Medicaid enrolled children under age 18 or did not provide care for children with special health care needs, and were therefore instructed not to continue beyond the first few survey questions.) Therefore, 194 surveys were used for analysis. When asked to describe their patient population by estimating the proportion of children with special health care needs that fall into various categories, the average responses were as follows:
- chronic disease or physical disability category: 39.4% of caseload
- cognitive impairment category: 30.0% of caseload
- mental health or behavior impairment category: 32.4% of caseload
When asked to estimate the proportion of their entire caseload comprised of children with special health care needs, the mean response was 10.4% (range between 1% and 100%). 60% reported that less than 10% of their caseload was comprised of children with special health care needs.
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