Building Partnerships with Managed Care Organizations (1995)


In October of 1995, Family Voices began a one-year project, funded through the Annie E. Casey Foundation, that included surveying members of families with children with special health needs in four selected cities: Atlanta, Denver, Des Moines, and Seattle about their experiences with their health plan.

Survey Design

The survey was designed as a tool to give feedback to the health care system from families of children with special health needs and to inform program and policy makers about families' perspectives in this time of rapid change. We wanted to gather information from families with children in both managed care and non managed care plans in order to establish a baseline of information about children with special health needs and how families view these children's health coverage.

In the Spring of 1995 Family Voices developed and distributed a draft questionnaire at an annual national training conference. This pilot asked questions which reflected the numerous concerns Family Voices staff were hearing from families across the country about their children's health care coverage. The survey was completed by 43 Family Voices State Coordinators, recognized family leaders. The family responses provided interesting information from a small number of families about how health plans were addressing the needs of children with special health needs. Insight gained from that pilot helped to shape the questionnaire used in the Casey study.

Family Voices worked in cooperation with New England Serve to develop a joint questionnaire to be used by both groups. This second questionnaire was designed to gather information from families regarding their child with special needs' use of health services and their satisfaction with 52 specific health services and delivery characteristics of their child's health plan. Children with special needs were broadly defined for this study as children who had health needs greater than those of normal children of a similar age. Questions were asked about their limitations of physical function, activities of daily living or social role in comparison to their age peers, as well as their needs for special health services. Demographic information including race, socio-economic status and education was included. A telephone number was provided for respondents to call in case they had any questions.

Distribution of the Questionnaire

Coordinators in each of the four cities distributed the questionnaire to families in a variety of ways. The majority of questionnaires were distributed by mail through family mailing lists and through cooperating programs, although other methods included leaving questionnaires in specialty and hospital clinics with drop boxes for questionnaire return, and distributing questionnaires at family meetings, in community meetings, and in person. In a few cases, questionnaires were completed through a telephone interview. It is difficult to report the return rate, since the methods of distribution varied widely and we are uncertain how many surveys were distributed.

A total of 330 surveys were returned by the time of data analysis, of which 323 were determined to be from families with children fitting our description of children with special health care needs; 104 from Seattle, 117 from Atlanta, 52 from Denver and 50 from Des Moines. The sample of families was not selected in a controlled manner.

The Results of the Survey

Who were the Families Responding?

The Family Voices surveys reached a diverse group of families, as shown in Table 1, with variations by site roughly representative of the composition of the different cities. Household incomes reported were from every category, with 36% of respondents overall indicating incomes under $30,000. One quarter of respondents reported having a high school education or less; another 21% reported "some college." A small percentage of respondents responded that their primary language was not English.

The highest percentage of families responding had health coverage for their child through the parents' employment (63%). Twenty eight percent of the families responding received coverage for their child through Medicaid and another 3.8% reported coverage through other state supported plans. In more than a quarter of the families responding, the child qualified for SSI. Families were asked whether the health insurance they had for their child was either a Preferred Provider Organization, a Health Maintenance Organization, the child was not in a managed care plan, or other. The majority of the families responding had children covered through some form of managed care plan (65%), while 15% reported that their child was not in a managed care plan and 19% did not classify their child's plan but reported "other."

What were the Health Needs of the Children in the Survey?

In every city, the majority of respondents reported having children with four or more specific special health needs, suggesting that the responding families had children with significant need for services. Among the 323 respondent questionnaires analyzed, most families reported that their child had limitations in function (75.2%) as well as needs for a variety of special health services, with the most commonly reported need (82%) being therapeutic services (see Table 4). Although the respondents reported that their children needed a large number of services, these children were also most often treated outside of hospital settings as can be seen in Table 3. Within the past 12 months, while a majority had seen their primary care provider more than 6 times and 42.3% had seen a pediatric specialist more than 5 times, 49% had not been seen in an emergency room, and 56% had not had a hospital stay. Respondents' children with special needs were from every age range, although more were 3 and under, and fewer were over age 13.

What did these Families Report about Health Care for their Child?

Family satisfaction with 27 health services and 25 aspects of service delivery are reported in a variety of ways in Tables 6-16. A broad view of the findings are discussed below. Please refer to the tables for more complete information.

  • Overall,services used by the most respondents received the highest satisfaction ratings. [Tables 7 & 8] For example:
    • Services that over 70 % of respondents needed and used and with which more than 50 % of respondents reported being "very satisfied" included: appropriate routine well child care, a primary care provider with knowledge of my child's special needs, prescription medications, and laboratory services
    • "Delivery characteristics" that over 70% of respondents used and with which more than 50% were "very satisfied" included: having time with my child's provider to ask questions, family inclusion in decision making and planning and waiting time to schedule appointments for primary care
    • Speech therapywas the only service that over 70% of respondents indicated needing/using but for which more than 40% of respondents indicated unmet needs, i.e."not satisfied" or "needed but not available."
  • Overall,services that fewer respondents reported needing received lower satisfaction ratings
    • Home nursing, personal care attendants,hospice services and counseling for my child were used by fewer than 30% of all respondents and over 40% of these respondents indicated unmet needs, i.e. "not satisfied" or "needed but not available". None of the services for which fewer than 30% of all respondents indicated a need were rated highly by respondents.
    • Mental health services including counseling for family members, family support groups, and out-patient diagnostic services that a moderate number of respondents (30%-69%) reported needing and using, had over 40% of respondents indicating unmet need, i.e. "not satisfied" or "needed not available". These mental health services received the lowest overall rating among the direct services.
  • Delivery of service areas that many respondents were dissatisfied with may lend themselves to low cost solutions [Tables 7 & 9] For example:
    • Over 40% of all respondents were dissatisfied with appeals or grievance< procedures. This points to a need for more straightforward information on appeals and grievances to be given to every enrollee in every plan.
    • Over 40% of respondents were dissatisfied with information about current research that might help my child. This probably reflects a desire for more information. Plans could help families access medical information, now readily available from many sources including the internet.
    • Over 40% of respondents were dissatisfied with helping the school understand my child's special needs. Knowing that this is an issue, plans might improve family satisfaction by working with families to develop low cost mechanisms for effective communication with school systems.
    • Over 40% of respondents were dissatisfied with transition from adolescent to adult services. Proactive identification of adult providers, and planning and coordination for these transitions within plans could address this issue.
    • Over 40% of respondents were dissatisfied with the flexibility to use cost effective alternative services, equipment or providers. Case management programs in traditional insurance plans that have allowed cost effective alternatives to be approved in specific cases have been in effect for a number of years. These models could be adapted to meet the needs of a wide range of children with special needs in all kinds of plans.
    • Over 40% of respondents were dissatisfied with waiting time to approve special services or equipment. A first approach to improving this situation would be for plans to give families clear information on the expected waiting times for such approvals, and how they might check on the status of their request. Eliminating "pro forma" procedures for reviewing cases when an ongoing need has been documented, and development of a "long term care plan" in which pre-approval was given for longer time frames could prove more cost effective and efficient for the plan and more satisfactory for the family.
  • Families with children not in managed care were considerably more satisfied than those in managed care with services and service delivery areas that are of most importance to children with special needs [Table 10] For example:
    • Families were twice as likely to be highly satisfied in non-managed care plans as in managed care plans (% highly satisfied in HMO, PPO, not in managed care) with services such as durable medical equipment, (35%,33%,71%) adaptive equipment (23%, 20%, 60%), disposable medical supplies (42%, 38%, 86%), nutritional products (29%, 18%, 60%), home nursing services 27%, 35%, 57%), personal care attendant services (31%, 20%, 67%), emergency room services (41%, 48%, 79%) 
    • Families were twice as likely to be highly satisfied in non-managed care plans as in managed care plans with aspects of service delivery of greatest importance to children with special needs (% highly satisfied in HMO, PPO, not in managed care) such as access to a case manager or care coordinator (25%, 29%, 59%), access to second opinions (27%, 39%, 59%), appeals or grievance procedures (12%, 15%, 42%), and flexibility to use cost-effective providers (21%, 24%, 41%).
    • The smallest variation in percent of families reporting high satisfaction is seen in appropriate well child care (HMO, PPO, not in managed care; 69%, 66%, 60%).
  • Responses from families not in managed care compared to those in two categories of managed care plans show a pattern of decreasing satisfaction with both services and delivery as choice is restricted [Tables 6,11, 12 &13] For example:
    • In overall evaluation of child's health plan, 63% of families not in managed care plans gave their child's plan the highest ratings, as compared to 58% of families in PPOs and 46% of families in HMOs.[Table 6].
    • In child's health plan covers costs to meet child's needs, 53% of families not in managed care said that their child's health plan covers costs to meet the child's needs, as compared to 49% of families in PPOs and 41% of families in HMOs.[Table 6].
    • Respondents in managed care plans were less likely to be "very satisfied" than those not in a managed care plan when rating specific services. In 21 of the 27 health services categories, families not in managed care plans were more highly satisfied than those in PPOs and HMOs. [Table 10]
    • Families not in managed care gave the highest satisfaction ratings in 21 of the 25 categories of service delivery, while those in HMOs and PPOs gave the highest ratings in only two categories each. [ Table 10]
    • The most unmet needs (represented by the combination of the "not satisfied" and "needed/not available" responses) were reported by respondents in HMOs (in 16 of the 27 direct service categories) while those in PPOs indicated the most unmet needs in 3 categories and those in not in managed care in 8 categories. [Table 11]
    • Respondents in HMOs had the lowest satisfaction ratings in the most categories of service delivery. In service delivery items those in HMOs reported lowest satisfaction in 13 out of 25 categories, while those in PPOs reported lowest satisfaction in 8 categories, and those not in managed care in 4 categories. [Table 12]


The information gathered in these surveys indicates progress toward providing family-centered care for children with special health care needs, evidenced in high levels of family satisfaction that their children are receiving good primary care. Over half of all respondents in both managed care and non-managed care plans also indicated high satisfaction that their child is receiving care from appropriate pediatric specialty providers. Families in both non-managed care and managed care health plans also reported relatively high satisfaction with most coverage of traditional, hospital based and "well care" services for children with special needs. (An exception to this pattern was in emergency room services with which 41% of families in HMOs and 48% of families in PPOs compared to 79% of families in non-managed care plans were highly satisfied. [Table 10]).

Families in all health plans, but particularly those in managed care plans, however, indicated that they are not as satisfied with their child's coverage for many specialized services needed by children with special needs including physical, occupational and speech therapies, durable medical and adaptive equipment and home care including supplies. These findings are consistent with those of our earlier Family Voices survey, although the spread of variation in satisfaction reported was greater in this survey. In the area of service delivery, there were strong differences in family satisfaction between families in non managed care and managed care plans in accessing care coordinators, second opinions, appeals and flexibility to use cost-effective providers, key services to families of children with special needs. Since families in non-managed care plans reported significantly higher satisfaction in all these areas, aspects of non-managed care plans should be examined carefully to explain why they are more satisfactory to families. As greater numbers of children with special health care needs are enrolled in managed care plans, it will become increasingly important to understand how the desirable characteristics of non-managed care plans can be adapted by managed care organizations to meet the special needs of these vulnerable children.

There is also a need for all plans to direct attention to some particular services, needed by the smallest percentage of children, such as hospice, home care and personal care. It was impossible to distinguish whether type of health plan affected the family satisfaction with these services since the numbers of responses in these categories were too few in this study. This finding identifies a key area to track, however, which is a plan's familiarity with effective and efficient pediatric models of such services for children. All plans also need to improve mental health services for families including counseling for the child, counseling for other family members, diagnostic out-patient services, family support groups and in-patient services, with well over half of families in all kinds of plans identifying most of these services as not satisfactory or needed but not available. Counseling for the child was the area of greatest "unmet need" (89% of families not in managed care, 60% HMO, 54% PPO, [Table 11]) Clearly mental health services need further investigation and attention.

Next Steps

The family experiences collected in this survey offer valuable information to families, managed care organizations, Medicaid agencies and other public and private policymakers, particularly in the current climate of rapid change in our health care systems. This information can help improve the way the current system is working as well as identify issues for further examination and discussion. Families must continue to be directly involved in efforts to collect and report such information. Families of children with special needs are willing and able to provide a wealth of information which can be helpful in focusing efforts of managed care organizations on areas of need. Families also have a number of creative solutions to problems and are ready and willing to act as partners with program and policy makers.

Family Voices will use lessons learned from this activity to guide our future information gathering approaches. Families filling out this questionnaire were eager to offer their comments. They provided helpful information about ways to make the questionnaire more family friendly. As we continue to collect information from families, Family Voices will seek help from research experts to assist in survey design, sampling strategies and data analysis.

We thank the families who filled out this questionnaire, our Casey site leaders, research consultants, Family Voices staff and all our partners, and most especially the Annie E. Casey Foundation through whose funding this effort was possible, for their collaboration in this initial survey process. Family Voices believes that families are the heart of our nation's health care systems and the experts on their children. We think this modest survey proves our point.

This data has been collected and analyzed through a project funded by the Annie E. Casey Foundation (June, 1997)

Project Contact

Nora Wells
Family Voices, Inc.
110 Hartwell Ave.
Lexington, MA 02421
Phone: (781) 674-7207
Fax: (781) 674-2851

You may also use our Online Contact Form to contact the Project Director.