Sources of Information
Multiple data sources are available to Montana for assessing the health status and needs of children with special health care needs (CSHCN) in the state. The sources include nationally standardized, phone-based surveys, state-developed mailed surveys, parent/guardian focus groups, and key informant interviews. The variety of data sources provides Montana with a rich range of topics and perspectives on CSHCN. Statewide surveys, such as the National Survey of Children with Special Health Care Needs (NSCSHCN) summarize information on all CSHCN in the state, even those who may not be connected with services or who receive services out of state. More targeted data sources, such as surveys sent out through organizations or contact lists, provide information on specific populations of CSHCN, such as those already receiving services through or connected with a program or organization. Focus groups and key informant interviews often have fewer participants, but may provide more detailed data than what is available through surveys.
The NSCSHCN is a phone survey of randomly selected households conducted every four to five years. Sample sizes are large enough to provide state-level summaries (approximately 750 people surveyed per state). Contacted households are screened for the presence of one or more child with special health care needs and, if a CSCHN resides in the household, parents or guardians are asked a series of questions. The results of the survey include an estimate of the prevalence of CSHCN in each state or locality, demographic factors, types of special needs, unmet needs, health care access and quality, and others. The NSCSHCN also provides state-level data on the core outcomes for CSHCN.
Some information on CSHCN is also collected in the National Survey of Children’s Health (NSCH), which follows a similar methodology as the NSCSHCN. The inclusion of CSHCN data in the NSCH allows for some comparisons of health status between children with and without special needs.
State-developed needs assessment surveys were distributed to parents and guardians of CSHCN through early intervention programs and clinics throughout the state in 2005. The recipients were identified because they had been referred to or were clients of the Children’s Special Health Services Section, the regional specialty clinics, or other organizations that provide services to children with special health care needs. The results provide a statewide summary of children somehow connected to and identified by the network of specialty services in the state.
The statewide needs assessment survey was limited to two pages (1 sheet of paper-front and back). Respondents were asked to identify the top five health needs for Montana’s children with special health care needs (CSHCN). The lists of health needs respondents were asked to select from were based on previous needs assessments and data collection (both in Montana and nationwide), national and state performance measures and health status indicators, and literature reviews. All respondents were asked to indicate the ages of the CSHCN in their household. Two questions were asked about informational resources currently and potentially used by parents and guardians. To attempt to delve into whether children have a medical home, several questions were asked about care coordination, and an open-ended question asking how the child’s primary care physician could be more helpful was also included. Respondents were asked to indicate what services they have difficulty accessing, and finally, a question about dental care was included to determine what percentage of children had seen a dentist in the past year, the distance to dental services, and the reasons why children had not received dental care.
As a part of the 2010 Maternal and Child Health (MCH) Needs Assessment, five parent focus groups were held around the state in large, small, and tribal communities in November 2009 and January 2010. The focus group populations were determined based on a review of data sources available for the needs assessment. Populations with the least data available to use in assessing their needs (such as adolescents and parents of children with special health care needs (CSHCN)) were identified as priorities for focus groups. The focus group results provide more in depth and specific information on their experiences with MCH issues in Montana than can be gathered from other data sources.
In October-November 2009-2010, key informant interviews were conducted with public health stakeholders throughout Montana. Those interviewed included public health nurses, directors and managers of local and state public health programs, physicians, public health department staff, school nurses, WIC staff, March of Dimes, dentists, insurance providers, and Head Start staff. The questions in the interviews covered major health issues, how the identified health issues were being addressed, barriers associated with the health issues, and suggested public health interventions to address the needs. The issues and needs of children with special health care needs were included in the “special populations” section.
The data sources included in this assessment are those that provide some statewide perspective on CSHCN. Very targeted data may be collected by specific organizations or providers to provide information for them on their clientele. However, because those data are often not readily available and may not be generalizable to the state overall, they are not included in the following summary.
Children with Special Health Care Needs (CSHCN)[1] in Montana
The NSCSHCN and NSCH provide an overview on all CSHCN in the state. The survey results offer a population-based perspective on the estimated number of CSHCN, the demographics of CSHCN, and what types of services they access and needs they have. Because the surveys are conducted the same way in all states, the results for Montana can be compared to those of other states or the US overall to determine how Montana differs. The following data from these two surveys are a basis for considering the statewide status of CSHCN in Montana.
13.6% of 0-17 year olds in Montana are children with special health care needs, similar to the national prevalence of 13.9%.[i]
25,853 CSHCN 0-17 years of age in Montana.i
25,995 Montana households, or 21.8%, have children with one or more special health care needs, the same prevalence as nationwide. i
In 2005/2006, Montana has the second highest prevalence of children with special health care needs compared to neighboring states. i
The prevalence of CSHCN in Montana increased from 12%in 2001 to 14% in 2005-2006.I
CSHCN in Montana are spread fairly evenly among urban, suburban, large town, and small town/rural areas, although urban areas have the highest prevalence of CSHCN (15.6%). i
Type of special health care needsMT
Est. # of children
% of 0-17 year olds
[95% confidence interval] / US
% of 0-17 year olds
[95% confidence interval] / Differences*
Functional limitations / 6,810
3.3%
[2.8-3.8] / 3.0%
[2.9-3.1] / None
Managed with prescription medications only / 10,480
5.1%
[4.5-5.7] / 6.1%
[5.9-6.2] / MT has lower prevalence
Above routine use of medical, mental health, or other services / 4,206
2.0%
[1.6-2.4] / 2.0%
[1.9-2.1] / None
Require prescription medicine and above routine use of services / 6,357
3.1%
[2.6-3.6] / 2.9%
[2.8-3.0] / None
Managed with prescription medications only / 10,480
5.1%
[4.5-5.7] / 6.1%
[5.9-6.2] / MT has lower prevalence
* Statistically significant differences as measured by 95% confidence intervals.
Source: National Survey of Children with Special Health Care Needs 2005/06
Neighborhood environmentsin Montana are similar for CSHCN and non-CSHCN in terms of overall safety, school safety, neighborhood amenities (sidewalks, recreation centers, libraries, parks), and the presence of rundown housing, litter, and graffiti. However, parents of CSHCN are significantly less likely to say they live in neighborhoods in which people are supportive, trustworthy, and helpful.ii[ii]
School-age CSHCN indicate they are less likely to care about doing well in school and do all required homework than children without special needs (31.4% compared to 48.7%). However, CSHCN and non-CSHCN had similar rates of being involved in volunteer activities (13.2% and 15.8%, respectively) and working for pay outside the home 10 or more hours (19.1% and 18.8%).ii
6.3% of Montana CSHCN receive SSI benefits because of a disability. i
The majority (52.2%) of CSHCN in Montana live in households with incomes below 200% of the federal poverty level, significantly different than the 41.2% of CSHCN nationally. i
17.4% of CSHCN in Montana were without insurance at least once during the previous year, significantly more than the 8.8% nationally. i
CSHCN in the US overall are significantly more likely to have private insurance than CSHCN in Montana, while in Montana CSHCN are more likely to be uninsured than CSHCN nationwide.i
Among all children in Montana, both CSHCN and non-CSHCN have similar levels of health care coverage, although CSHCN are more likely to be covered by public insurance (33.8% compared to 20.3%).ii
9.8% of CSHCN in Montana do not have a usual source of care for both sick and well care, compared to 7.1% nationally.i
Parents’ general health and mental/emotional health were significantly lower among households with CSHCN compared to those without CSHCN.ii
CSHCN were significantly more likely to have parents who reported usually or always felling they were hard to care for or bothersome, or were angry with them during the past month (22.8% [16.8-28.8], 5.2% [3.7-6.7]).ii
CHSCN Outcome Measures
The Federal Maternal and Child Health Bureau developed six core outcome measures to indicate the progress towards family-centered and community-based systems of care for children with special health care needs:
- Families of children and youth with special health care needs partner in decision-making at all levels and are satisfied with the services they receive;
- Children and youth with special health care needs receive coordinated ongoing comprehensive care within a medical home;
- Families of CSHCN have adequate private and/or public insurance to pay for the services they need;
- Children are screened early and continuously for special health care needs;
- Community-based services for children and youth with special health care needs are organized so families can use them easily;
- Youth with special health care needs receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence.
Resultsi
For CSHCN outcome measures 1, 2, 5, and 6, Montana indicators are not significantly different than the nation as a whole.
CSHCN in Montana are significantly less likely than CSHCN nationally to have adequate public or private insurance and to be screened early and continuously for special health care needs.
Not surprisingly, CSHCN in Montana with a medical home[2] are more likely to be screened early and continuously than those without a medical home.
Needs and Strengths
Indications of needs and strengths can be pulled from multiple sources. The following section summarizes the data on needs and strengths from each of the statewide sources of data on children with special health care needs.
National Survey of Children with Special Health Care Needs and National Survey of Children’s Health
The comparison of CSHCN in Montana to those nationwide offers perspective on how our state compares to other locations. Because some factors specific to the state can also affect the health status of CSHCN and their access to care, another important consideration is how children with special needs in Montana compare to those without special needs. Appendices A and B include tables with confidence intervals for the data summarized below.
CSHCN in Montana compared to nationwidei
In Montana, 11.6% of CSHCN had one unmet need for equipment or services in 2005/06, similar to 10.0% nationwide. However, 10.2% of CSHCN in Montana had two or more unmet needs for equipment or services, significantly higher than 6.0% nationwide.
CSHCN in Montana are significantly less likely than CSHCN nationwide to need preventive medical care, however, among those who do need it, their need is more likely to be unmet.
Families of CSHCN in Montana are significantly more likely to need respite care than families nationwide.
6.6% of Montana CSHCN had an unmet need for mental health care or counseling, compared to 3.7% of CSHCN nationwide.
Montana CSHCN have a significantly higher unmet need for family support services overall than nationwide (7.6% in Montana and 4.9% in the US), however, the unmet need for specific support services (respite care, genetic counseling, and mental health services and counseling) is not significantly different in Montana compared to the US overall.
58% of parents/guardians are very satisfied with the services their children receive.
Montana CSHCN had a higher unmet need for both preventive and other types of dental care.
Families of CSHCN in Montana were significantly more likely to be very satisfied with the doctor’s communication with a child’s school and other programs than families of CSHCN nationwide.
CSHCN in Montana compared to non-CSHCN in Montanaii
Not surprisingly, CSHCN were significantly less likely to have excellent or very good health status and CSHCN 6-17 years of age were significantly more likely to have missed 11 or more school days due to illness or injury compared to children without special needs. CSHCN were also significantly less likely to have teeth in excellent or very good condition and more likely to have had two or more oral health problems in the past six months.
CSHCN are significantly more likely than children without special health care needs to have unmet needs for medical, dental, mental health, or other health care (20.2% [13.8-26.6] compared to 5.9% [4.3-7.6]).
More CSHCN saw health care specialists than non-CSHCN, which is not surprising, however, CSHCN who needed specialist care were significantly more likely to have problems getting it than non-CSHCN who needed specialist care (44.3% [37.4-51.3] compared to 13.7% [11.8-15.7]).
In terms of standard care by providers, parents of both CSHCN and non-CSHCN in Montana had similar frequencies of being asked by health care providers whether they had concerns about their child’s learning, development or behavior (approximately 48%). However, nationally, parents of CSHCN were more likely than parents of non-CSHCN to be asked about concerns.
Among children who needed referrals, CSHCN and non-CSHCN had very similar rates of being able to access the referrals they needed (85.5% and 85.2%).
CSHCN in Montana are significantly less likely to have a medical home than children without special needs (53.2% [46.1-60.3] and 63.4% [60.4-66.4], respectively), however, over 90% of both CSHCN and non-CSHCN have a usual source of care for both well and sick care (95.9% and 93.6%, respectively).
Among Montana children, 28.2% of children without special health care needs did not receive needed care coordination, while 43.1% of children with special needs did not receive the care coordination they needed.
Among Montana children who received needed care coordination, CSHCN were significantly less likely to receive effective coordination than non-CSHCN (56.9% [48.4-65.4] and 71.8% [66.3-77.2]).
2005 CSHCN Needs Assessment
The 2005 Montana CSHCN Needs Assessment included information from families that were already connected with services or programs for CSHCN in Montana. The results provide a summary of the needs and recommendations of CSHCN in Montana who are currently accessing some type of health resource.
Most important needs of CSHCN in Montana and primary barriers to addressing the needsNeed / Primary barrier
Clinics to address the special needs of children / Limited availability of services
Health insurance / Cost of services
Access to dental care / Cost of services
Access to health care / Cost of services
Safe and affordable child care/day care / Cost of services
Source: 2005 Montana CSHCN Needs Assessment
Over 86 percent of parents stated that their child or children’s health care is well-coordinated. Eighty-three percent were satisfied with the care their child receives from his or her primary care physician. Ten percent of parents were neutral and less than six percent were dissatisfied with the care their child receives. Seventy-nine percent of respondents said that their child’s primary care doctor helps them with their child or children’s special needs. Approximately 23 percent said their child or children’s primary care doctor does not help them with their child’s special needs.
The second care coordination question asked parents about who coordinated their child’s care. Many respondents indicated more than one care coordinator. The most commonly listed care coordinator listed was a parent, grandparent, guardian or foster parent, with approximately sixty-five percent of respondents listing themselves or a parent figure as the coordinator. Medical providers such as doctors, specialists and nurses were listed as a care coordinator by just under half of the respondents. The state’s early intervention centers and social workers and case managers were noted as care coordinators for just under 20 percent of the children included in the survey. Hospitals or clinics were considered a care coordinator by approximately 11 percent of the parents who responded to the survey.
Parents were asked to indicate how their child or children’s primary care physician could be more helpful to them. 518 respondents (52 %) did not respond to the question, were unsure of how their physician could be more helpful, or noted that they were very happy with their primary care physician. The most common suggestions for how primary care physicians could be more helpful fell into several categories: 1) availability/accessibility, which includes having difficulty scheduling appointments and seeing other medical providers in a practice instead of the primary care physician; 2) knowledge about the child/children’s condition(s); 3) communication with parents/guardians, which includes time spent and method of communication, and; 4) coordination with other providers and specialists.