Embargo

-­‐ Parents of children with ADD/ADHD and autism were also 63% less likely to state that their child had received a family-centered care as compared to parents of children with ADD/ADHD, although this relationship is marginally significant (p=0.06).

34 -­‐ Parents of children with ADD/ADHD and autism were 60% less likely to

report that their child have received effective care coordination than parents of children with ADD/ADHD, holding all other variables in the model constant.

-­‐ Parents of children with ADD/ADHD and autism were 89% less likely to mention that they had received help to coordinate their child’s health care when needed.

-­‐ Parents of children with ADD/ADHD and autism were 80% less likely to report being very satisfied with communication among their child’s doctors.

Table 2. Adjusted Odds-Ratios*

Adjusted Odds-Ratios

P-Values [95% Confidence Interval]

Medical Home

Autism 0.40 0.202 [0.10-1.66]

ADD/ADHD-Autism 0.26 0.031 [0.08-0.88]

Family-Centered Care

Autism 0.90 0.849 [0.32-2.55]

ADD/ADHD-Autism 0.37 0.061 [0.13-1.05]

Care Coordination

Autism 0.30 0.076 [0.08-1.13]

ADD/ADHD-Autism 0.40 0.007 [0.08- 0.66]

Received help to coordinate child's health care, when needed

Autism 0.63 0.537 [0.15- 2.76]

Add/ADHD-Autism 0.11 0.000 [0.03-0.33]

Satisfied with communication among child's doctors

Autism 0.31 0.071 [0.08-1.11]

ADD/ADHD-Autism 0.20 0.009 [0.06-0.67]

*ADD/ADHD is the reference category. AORs adjusted for gender, age, race, ethnicity, family structure, poverty level, education level, and type of insurance

35 DISCUSSION

The medical home is at the forefront for improving health care as Arkansas has received $42 million to begin developing these homes (U.S.

Department of Health and Human Services, 2013). Children with complex health conditions, such as ADD/ADHD and autism, represent 20% of those in the state of Arkansas (NS-CSHCN, 2009-2010). These conditions require ongoing, professional care, making apparent the necessity for these children to have a medical home. To examine the extent to which current children aged 6-17 years with ADD/ADHD and autism have access to a Medical Home in Arkansas we examined the following: (1) Are there differences in access to a medical home between children aged 6-17 years with ADD/ADHD as compared with children with autism and with children who have both disorders in Arkansas?; (2) What are the socio-demographic characteristics associated with having a medical home for children with either of these two disorders? (3) Does the likelihood of having a medical home differ between children with ADD/ADHD, with autism, and with both ADD/ADHD and autism in Arkansas? (4) What are the specific components of a medical home that are lacking for these children?

Are there differences in access to a medical home between children aged 6-17 years with ADD/ADHD as compared with children with autism and with children who have both disorders in Arkansas?

In Arkansas six out of ten children aged 6 to 17 years with either ADD/ADHD or autism did not meet all the criteria for having a medical home. However, a higher proportion of children with both disorders did not have a medical home. Furthermore, children with both ADD/ADHD and autism faced more hurdles with regard to access to care in Arkansas as compared to children who suffer from ADD/ADHD or autism alone.

Indeed, a higher proportion of them did not have one or more personal

36 doctors or nurses, and more than half did not have a family-centered care or did not meet 1 or more elements of care coordination. They faced

problems related to coordination of care, access to specialty care, problem of insufficient time during doctor’s visits. A higher proportion of parents of children with both disorders reported having issues with their child’s health care provider carefully listening to them, and considering them like a partner. A higher proportion of parents also reported that their child’s doctors were insensitive to their customs and values, and were less satisfied with the communication among doctors.

An expected finding to emphasize is that parents in Arkansas had less reports of a usual source of care as compared to the United States. In accordance with the literature, when compared to the United States, the South, specifically Arkansas, has a higher prevalence of childhood ADHD, therefore making it more difficult to gain access to care (Akinbami et al.

2011). The literature emphasizes coordinated care as a way to reduce health costs and enhance overall health (Boudreau et al. 2014).

What are the socio-demographic characteristics associated with having a medical home for children with either of these two disorders?

With the southern region of the United States having a higher population of children with developmental disorders, according to the CDC, it makes it more challenging for parents of these children to gain access to care for their child. This can be due to a variety of socio-demographic reasons. Although research shows that males are more likely to be diagnosed with developmental disorders over females (Boyle et al., 2011), gender does not come into play when determining access to medical homes in Arkansas.

Age was a slight factor with regard to having a medical home or not, with parents of children aged 6-10 years reporting more access.

Furthermore, although parents of Hispanic children with ADD/ADHD

37 reported having less access to a medical home than white children, race was not found to be a significant factor in having access to medical home.

Poverty was found to be associated with having a medical home. Indeed, parents of autistic children living in households with income levels at 100%-199% of the poverty level (e.g. between $20,090 and $40,180 for a family of three) have less access to medical homes. This parallels with the literature in the sense that lower income level populations have been found to have more difficulty accessing medical care (Akinbami et al.

2011).

Does the likelihood of having a medical home differ between children with ADD/ADHD and autism in Arkansas?

As compared to parents of children with ADD/ADHD, parents of children with ADD/ADHD and autism were less likely to report having a medical home. Toomey et al. (2010)’s research did underline that ADD/ADHD are less likely to have a medical home. However, to our knowledge, no studies have previously investigated access to medical home with respect to these two conditions.

What are the specific components of a medical home that are lacking for children with these two disorders?

Parents of children with both ADD/ADHD and autism were less likely to state that their child had received a family-centered care; they were less likely to report that their child had received effective care coordination; they were less likely to mention that they had received help to coordinate their child’s health care when needed, and they were less likely to report being very satisfied with communication among their child’s doctors. No statistical differences were found in access to a medical home between children with ADD/ADHD vs. autism. This supports the findings of Toomey et al. (2010) who found that parents of children with ADHD report worse performance across key dimensions of primary care compared with

38 parents of children with asthma. Again, to our knowledge the lacking of these specific components of a medical home in children with both conditions have not been previously investigated.

Nursing Implications

Nurses play a vital role in the care of patients with ADD/ADHD and Autism. These children often times have special needs at school and the nurse has an important part in setting a care plan including medications, interdisciplinary appointments, and goal setting. Nurses are a key member to the medical home interdisciplinary team and are facilitators of

communication among families, children, and physicians. This research is significant to nursing in that it can further the development and

improvement of the medical home for these children.

Limitations of the Study

Because this study was based on secondary data, we were limited to the variables available in the dataset. Other variables that have been found to have a potential effect on access to medical home in the literature were not included in our analysis. Moreover, in the NS-CSHCN survey, answers on children are parent-reported, and may not reflect an accurate reflection of the variables measured. This may introduce some bias in the study. Finally, the NS-CSHCN (2009-2010) is a cross-sectional data; it only provides a snapshot of the factors at one point in time. Therefore, only associations can be incurred, not causality. Despite these limitations, the findings from this study have the potential to inform both health care professionals and policy-makers on the importance of providing a medical home to children with chronic health conditions in Arkansas.

39 CONCLUSION AND RECOMMENDATIONS

More research needs to be undertaken in order to determine why children with autism and ADD/ADHD have limited access to medical home in Arkansas. Because of the complexities of these conditions, and the multiple needs of these children incorporating a behavioral component into patient centered-care and the medical home is vital (Kathol, deGruy, Rollman 2014). It has been shown that incorporating behavioral services into primary care is exceptional practice rather than usual (Kathol, deGruy, Rollman 2014). According to Kathol, deGruy, and Rollman, there are seven necessary components to provide integrated behavioral health care into a medical home. These components include combining medical and behavior health benefits, targeting behavioral health history, using

behavioral teams, matching behavioral expertise to treatment need, using evidenced based behavioral treatments, and cross-disciplinary care (Kathol, deGruy, Rollman 2014). With 40% of patients seen in primary health having behavioral health conditions, behavioral comorbidities are common (Kathol, deGruy, Rollman 2014). Billions of dollars are being spent each year on unnecessary services because behavioral conditions are not properly treated and coordinated among health care providers (Kathol, deGruy, Rollman 2014). A major problem with behavioral health is that almost 70% of conditions are neither assessed nor treated (Kathol, deGruy, Rollman 2014). This can no longer be overlooked. Integrated behavioral health services have the potential to add an important component to patient care and the medical home.

Children with autism and ADD/ADHD in Arkansas are in greater need of medical homes. With the growing prevalence of these disabilities, it is vital that these homes become more accessible. Arkansas has been granted $42 million dollars as part of The Triple Aim Objective in order to begin developing this medical model. With reported satisfaction rates and

40 gaps in care, improvements must be made in order to provide the best level of care to these children.

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