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Children and Youth with Special Health Care Needs: A Mohave County Community Assessment

Mohave County, Arizona

August 2014

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ACKNOWLEDGEMENTS

This report was commissioned in February 2014 by the Mohave County Department of Public Health (MCDPH). MCDPH received funding from the Arizona Department of Health Services as part of the Healthy Arizona Policies Initiative (HAPI). This report was prepared by Saguaro Evaluation LLC (www.saguaroevaluation.com), an evaluation and social service consulting group with expertise in needs assessment, training, and human services program evaluation. The community assessment of children and youth with special health care needs began in February 2014 and the report was completed in August 2014. We would like to recognize the thoughtful input and assistance of the program staff within MCDPH, the survey advisory committee, and the Mohave County Special Needs Advocacy Coalition (SNAC). Moreover, we would like to thank all the parent/caregiver, youth, school staff, provider participants for sharing their time and experiences with us. Questions and/or requests regarding this report directed to Mohave Department of Public Health, Tobacco Use and Chronic Disease Prevention Program, 700 W Beale St., Kingman, AZ 86401 or by phone at (928) 753-0794. Additional information regarding this community assessment including copies of surveys used can be found at the SNAC website (www.snacmc.org).

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TABLE OF CONTENTS List of Tables 4 List of Figures 5 Executive Summary 6 Introduction 12 Methodology 15 Key Findings: Quantitative Data Analysis 18 Key Findings: Qualitative Data Analysis 31 Key Findings: School Accommodations 51 Recommendations: Main Focus of SNAC 52 Next Steps 54

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LIST OF TABLES Table A. Desired Specialty Services 34 Table B. Recommended School Services for CYSHCN 45 Table C. Suggestions for Creating Public Awareness of Resources for CYSHCN 47

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LIST OF FIGURES Figure 1. Race/Ethnicity of CYSHCN in Arizona Compared to the Nation 13 Figure 2. Participants by Gender 18 Figure 3. Location of Providers 20 Figure 4. Where CYSHCN Seek Services, According to Parents/Caregivers 21 and Youth Figure 5. Youth Diagnoses According to Group Surveyed 22 Figure 6. Insurance Type as Reported by Parents/Caregivers 23 Figure 7. Insurance Type Accepted by Providers 23 Figure 8. Types of Services Desired by Parents/Caregivers for Their Child 25 Figure 9. Adequacy of Training (Self-Report) 27 Figure 10. Perceived Adequacy of Training of Other Staff 28 Figure 11. Obstacles CYSHCN and Their Families Face When Receiving 29

Services, According to Parents/Caregivers and Providers Figure 12. School Employees’ Perceived Obstacles in Providing Quality Care 30

to CYSHCN

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EXECUTIVE SUMMARY Children and youth with special health care needs (CYSHCN) are an exceptionally diverse population with a range of conditions crossing physical/medical, developmental, behavioral, and emotional areas. Research on CYSHCN in Arizona sheds light on potential barriers experienced by CYSHCN and their families such as limited access to quality health care, insurance barriers, and special education complexities.1 However, until this assessment there was only anecdotal information about the experiences of CYSHCN and their families residing in Mohave County. For this reason, the Mohave County Department of Public Health (MCDPH) as part of the Healthy Arizona Policies Initiative (HAPI) received funding from the Arizona Department of Health Services to conduct a community assessment to identify the needs and gaps in services of CYSHCN in Mohave County. Community assessment findings and recommendations will be used by MCDPH and the Special Needs Advocacy Coalition (SNAC) to guide strategic planning, policy, and system change efforts. Methods At the end of nine weeks spanning March through May 2014, MCDPH collected a total of 383 surveys including the following: 49 youth, 116 parents/caregiver, 71 provider, and 147 school staff surveys. Surveys were available in an online and paper and pencil format. The majority of surveys collected (58%, n= 222) were completed online. Paper and pencil surveys were completed at community events, professional conferences, parent/caregiver support groups, and school district offices. Surveys included both multiple choice and open-ended question responses. An additional eight parent/caregivers were interviewed about their experience and included in larger qualitative data analyses. Additionally, MCDPH received feedback regarding Individualized Education Programs (IEPs) from participants at the Kingman parent/caregiver support group and their responses are included in the larger analyses. Major Findings: Quantitative Data

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The majority of respondents from each group (youth, parents/caregivers, school staff, and providers) worked or sought services in three primary geographic areas in Mohave County: Kingman, Bullhead City, and Lake Havasu City. CYSHCN. According to self-report data, youth as a whole had a wide range of conditions concerning cognitive, developmental, physical, emotional, and behavioral challenges. More parents/caregivers (n=41, 70%) reported having CYSHCN with developmental diagnoses such as Autism Spectrum Disorders, cognitive delays/learning disabilities, or genetic conditions such as Down Syndrome. Half the youth (n=25, 50%) said their disabilities do not inhibit them from participating in activities, nor did they believe their disability prevented them from going places (n=40, 80%). However, it is important to note many youth were unable to complete the survey because of the limitations of their special health care need and therefore not included in the analysis. Access to Care. Almost twice as many parents/caregivers (n=77, 66%) said their child was covered by public health insurance (AHCCCS, ALTCS) compared with private coverage (n=45, 39%). Parents/caregivers indicated their children needed a wide range of services such as: dental; physical, occupational, speech, and behavioral therapies; holistic approaches; respite and childcare; feeding support; holistic approaches; and pediatric specialties (i.e. neurology, urology, surgeons, gastroenterologist, genetics, and cardiologists). Of the services identified by the survey, the greatest number of parents/caregivers desired dental (n=59, 51%), speech (n=52, 45%), occupational therapy (n=49, 42%), and counseling services (n=49, 42%). Additionally, 36% of parents/caregivers desired respite services (n=42) and 41% desired specialized childcare (n=47). Satisfaction with Health Care Services. More than three quarters of youth indicated they are happy with the health care services they receive (n=39, 78%). A larger percentage said their doctor talks to them about how to be healthy (n=41, 82%), and even more said they feel safe around the people who care for them (n=47, 96%). Providers and parents were divided when reporting their level of satisfaction with the health care services offered to CYSHCN in Mohave County. While 84% of

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parents/caregivers (n=97) reported being somewhat to very satisfied with health care services, fewer providers (n=16, 23%) expressed the same level of satisfaction with services. In fact, the majority of providers (n=26, 37%) reported being somewhat to very dissatisfied with health care services; 33% were neutral (n=23). Satisfaction with Educational Services. Almost half of parents/caregivers (n=57, 49%) reported being somewhat dissatisfied to very dissatisfied with the educational services received by their CYSHCN. Over half (n=66, 56%) believed the IEP process could be improved. Of the 150 school staff surveyed, only 12 (8%) said they were satisfied with the educational services available to CYSHCN. Like parents/caregivers, half the school staff respondents (n=75) said they felt the IEP process could be improved. Barriers to Health Care Services. When providers were asked to identify the different obstacles CYSHCN and their families face in receiving quality health care, 99% felt CYSHCN and their families did not know how to navigate the system. A large majority of providers (68%) also felt insurance issues created barriers to access to care. A large number of parents/caregivers (n=48, 41%) reported cost as an obstacle to acquiring services for their CYSHCN. Almost 37% (n=43) mentioned health care plan limitations as a barrier; 57% (n=65) reported services were not available in their area; and 23% (n=27) said the child’s provider does not know how to provide care. Barriers to School-Related Services. In a check all that apply question, the majority of school staff agreed educational services for CYSHCN faced challenges related to costs (n=79, 111%), lack of resources (n=76, 107%), and the absence of specialty schools (n=66, 93%). Similarly, 38% of parents/caregivers felt the scarcity of educational resources was an obstacle to providing educational services for their children. Handicap accessibility was also a major concern among school staff as well as youth. For example, six out of ten school staff members said their school did not have a wheelchair accessible playground. One out of four youth said they were not able to use the playground where they lived. Parents/caregivers confirmed these findings with 103 of the 116 parents/caregivers surveyed (87%) reporting they did not have a playground in the area with accommodations for CYSHCN.

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Major Findings: Qualitative Data Open-ended responses from all the surveys (parents/caregivers, providers, school staff, and youth), parent/caregiver interviews, and parent/caregiver group feedback greatly supported the quantitative findings. Three major themes emerged from the qualitative data collected from all surveys, interviews, and group feedback. Below are the identified themes and subthemes within each major category as well as school accommodations.

1) Access to Services Providers Specialty services Family support Socialization and physical activity Health care coverage

2) School Environment

Learning supports (IEP, 504, SPED classes) Communication Resources and funding

3) Training & Education

Coordination and awareness of resources Community awareness and engagement Training and education for parents/caregivers Educator and provider training

Additionally, in the school staff surveys, participants were asked to evaluate the ability for CYSHCN to access the school building. There were three areas identified for improvement.

School Accommodations Wheelchair accommodations

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Accessible doors and hallways Handicap-friendly playgrounds.

Next Steps The Mohave County Community Assessment for Children and Youth with Special Needs (CYSHCN) is available to the public. This is Mohave County’s first comprehensive assessment regarding the needs of this underserved population. The assessment findings will be used as awareness and educational tools to inform all county residents about the needs and barriers that children with special needs encounter every day. The complete assessment is posted on the Mohave County Department of Public Health website (www.mohavecounty.us) and on the Special Needs Advocacy site (www.snacmc.org). Important findings will be highlighted during a Fall 2014 public forum (to be scheduled) and press releases distributed to local publications. Access to the assessment findings will help healthcare providers and community agencies determine service gaps, forecast service areas, identify improvement strategies and advance the quality of care for this often neglected population. The Special Needs Advocacy Coalition (SNAC) will use report findings in development and implementation of a countywide strategic plan to improve the lives of special needs children and youth. Findings from this report will help identify and direct areas of focus of the Mohave County Special Needs Advocacy Coalition (SNAC). With this goal in mind, school staff, providers, and parents/caregivers had the opportunity to share their vision for the focus of SNAC’s work. All groups identified five major priority areas to improve health care and school services for CYSHCN in Mohave County:

1) Needs Assessments 2) Coordination & Awareness of Resources 3) Access to Care 4) Special Education and Related Services 5) Parent/Caregiver Support and Education

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Children And Youth With Special Health Care Needs: A Mohave County Community Assessment

INTRODUCTION

The Mohave County Department of Public Health (MCDPH) as part of the Health in Arizona Policies Initiative (HAPI) received funding from the Arizona Department of Health Services to conduct a community assessment for children and young adults living with special health care needs in Mohave County. The purpose of this community assessment was to identify the needs and gaps in services of children and youth with special health care needs (CYSHCN) in Mohave County. Information and data was obtained from the youth themselves, their parents/caregivers, school staff, and providers. Community assessment findings and recommendations will be used by MCDPH and the Special Needs Advocacy Coalition (SNAC) to guide strategic planning, policy, and

system change efforts. Findings will also be available to other community partner organizations and stakeholders serving CYSHCN through the MCDPH website and local publications to assist their planning, identify areas of improvement, and aid in future funding applications. Additionally, this report

is part of the public health accreditation of MCDPH.

Children and youth with special health care needs (CYSHCN) are an exceptionally diverse population with a range of conditions crossings physical/medical, developmental, behavioral, and emotional areas. The severity of any given condition can vary from mild to severe making this population historically challenging to limit and define. This report will use the Maternal and Child Health Bureau’s (MCB) definition to define CYSHCN as children up to age 21, who have or are at risk for a chronic physical, developmental, behavioral, emotional or potentially disabling condition and who also require health and related services of a type or amount beyond that required by children generally.

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Using the MCB definition of CYSHCN, the 2009-2010 National Survey of Children with Special Health Care Needs (i.e. 2009-2010 National Survey) estimated 241,067 children under the age of 18 years old living in Arizona had a special health care need.1 Using 2010 U.S. Census data, CYSHCN make up 14.79% of children under the age of 18 years old in Arizona.2 Race, Ethnicity, and Gender

There is not enough information concerning CYSHCN in Mohave County. However, comparisons of National and Arizona data on CYSHCN by race, ethnicity and gender show that the prevalence of CYSHCN in Arizona was similar to national prevalence rates by gender and Hispanic origin. Larger differences are portrayed in Figure 1 whereby Arizona had more African American CYSHCN than reported nationally (22.8% vs. 17.5%).

Insurance Coverage

According to the 2009-2010 National Survey, Arizona’s CYSHCN were more likely to have been without insurance at some point within the last year than their national counterparts (14.2% vs. 9.3%).4 Moreover, at the time of the survey in 2009, 39.2% of Arizona’s CYSHCN who were insured stated they did not have adequate coverage compared to 34.3% nationally.4 CYSHCN living in Arizona also experienced more difficulties accessing care when compared to CYSHCN nationally. In 2009-2010, 29.7% of Arizona’s CYSHCN experienced an unmet need for specialized health care services compared to 23.6% nationally.3 A larger percentage of Arizona’s CYSHCN needed a referral and had difficulty getting it than CYSHCN nationally (30.2% vs. 23.4%).3 When

Figure 1. Race/Ethnicity of CYSHCN in Arizona Compared to the Nation Slightly more African American CYSHCN in Arizona than Nationally

15.7

22.8

14.5 16.3

17.5

13.6

0

5

10

15

20

25

White African American Other races

Pe

rce

nta

ges

State Nation

Note. “Other races” include Hawaiian, Pacific Islander, Alaska

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sick, 14.7% of Arizona’s CYSHCN did not have a usual source of care or relied on the emergency room for care (compared to 9.5% nationally).3 In Mohave County, about one in five children under the age 18 are uninsured; one in four are living under 100% of the Federal Poverty Level, and therefore would be eligible for AHCCCS.3 Access to Care

In general, people in poverty experience more barriers to accessing health services due to lack of insurance, transportation, childcare, and other obstacles. Many of Mohave County residents face economic challenges. In fact, 40% of residents have incomes that fall 200% below the Federal Poverty Guidelines

compare to 35% in the State of Arizona.2 Almost 25% of children 0-17 years of age in Mohave County live in households that are 100% below the poverty level compared to 21% of the children in the Arizona.2 The number of specialized providers is also very limited. For example, there are only 10 mental health providers for adults and none for children in the whole County.2

Geographic Barriers and Transportation. Since 2012, Mohave County has been designated as a Health Professional Shortage Area (HPSA), defined by the U.S. Department of Health and Human Services as having a shortage of medical, dental, and mental health providers.4 Given the minimal number of providers in the region, CYSHCN and their families often have to travel to major metropolitan areas in order to receive specialty services. Depending on one’s location, families may find it more convenient to travel across state lines to Las Vegas, Nevada or St. George, Utah to receive services rather than traveling to Phoenix. However, providers outside of Arizona rarely accept Arizona’s Medicare insurance, AHCCCS (Arizona’s Health Care Cost Containment System) making it difficult for low-income families to receive care.

Special Education. The Individuals with Disabilities Education Act (IDEA) determines eligibility requirements for children with a disability who qualify for free special education and related services while attending public schools.5 In return, states receive

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federal funds to identify, evaluate, and provide special education services to CYSHCN. The Arizona Child Find Program specifies how public schools in Arizona will comply with IDEA stating it is the school’s responsibility to assess and place students with appropriate services.6 Under IDEA, anyone who receives special education and related services must have an Individualized Education Program (IEP).7 As a team, school staff and parents/caretakers of CYSHCN develop an IEP, which outlines (a) the annual goals for the student and (b) the student’s special education curriculum and supplemental services. If students do not qualify for special education services under IDEA, they may qualify for services under Section 504 of the Rehabilitation Act of 1973. Section 504’s definition of disability tends to be broader than IDEA. While Section 504 does not allocate funds for special education, it specifies schools will loose federal funding if they fail to provide students with disabilities reasonable accommodations to effectively participate in public education programs.8 The above information regarding CYSHCN in Arizona, access to care, geographic barriers, and special education sheds some light on the potential barriers experienced by CYSHCN in Mohave County. However, only anecdotal information exists from the perspective of the CYSHCN themselves, their parents/caregivers, school staff, and providers in Mohave County. Accordingly, this community assessment aims to collect information and data from a range of sources within Mohave County regarding the needs and gaps experienced. METHODOLOGY In late 2013, MCDPH staff began researching and reviewing survey tools used for CYSHCN including the parent/caregiver and youth survey instruments utilized by Maricopa County. In February 2014, MCDPH staff thoughtfully formed a survey advisory committee. Using the Maricopa County instruments as models, the committee adapted survey questions for Mohave County populations and created additional survey instruments designed for school staff and providers. At the end of March 2014, MCDPH and the survey advisory committee finalized the following tools

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for use in this community assessment: parent/caregiver survey, school staff survey, youth survey, and provider survey. All surveys were created and distributed in English. All surveys targeted the following areas of interest: 1) demographics; 2) care coordination; 3) types of services used; 4) satisfaction with services; 5) barriers and gaps to services; 6) current health policies (positive and negative) and; 7) future priorities for the Special Needs Advisory Coalition (SNAC). MCDPH coordinated all consent and human subjects protections throughout survey administration. MCDPH translated the surveys into Survey Monkey, an online survey software. The surveys were available to the public for nine weeks in March, April, and May 2014. The survey links were hosted centrally by MCDPH at the SNAC website (www.snacmc.org). Survey Promotion and Distribution. MCDPH staff made concerted efforts to widely publicize and distribute paper and pencil surveys and online survey links. The Mohave County Government issued a news release regarding the community assessment and survey links that were published across Mohave County such as The Standard, Mohave Daily News, Kingman Daily Miner, Bullhead City Bee and Lake Havasu News Herald. Additionally, the survey links were promoted online through the SNAC Facebook group and a CYSHCN provider website article. MCDPH staff also distributed the survey links through the SNAC emailing lists as well as school staff and provider email mailing lists. MCDPH staff distributed paper and pencil surveys in person at a variety of community events and professional conferences including the City of Kingman Employee Fair, Tropicana Health Fair, Black Mountain Elementary School Health Fair, the Infant Toddler Mental Health Symposium, and the Special Needs Resource Fair in Kingman. Paper and pencil parent/caregiver and youth surveys were distributed at parent/caregiver groups and school districts in Havasu, Kingman, and Bullhead. Youth

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who returned the consent form and survey to school by a certain date received a small gift. Additional Parent/Caregiver Feedback. At the end of all adult surveys (provider, school staff, parent/caregiver), respondents were invited to leave their contact information for participation in a short interview with MCDPH staff. The interview questions were designed to gather further information about the experiences of CYSHCN, their families, and providers. A MCDPH staff member interviewed eight parents/caregivers. These interview responses were included in larger qualitative data analysis and used as examples to illustrate themes. MCDPH also received additional feedback regarding individualized education plans from participants at a Kingman parent/caregiver support group. Their responses were aggregated into the larger analysis and used to illustrate themes. Data Analysis. The community assessment included paper and pencil and online surveys. All paper and pencil surveys collected were entered into Survey Monkey online survey software by MCDPH staff. Saguaro Evaluation Group downloaded the de-identified data from the online database into IBM Statistical Package for the Social Sciences (SPSS) for secondary data analysis. Frequencies, percentages, and means were examined when appropriate. Missing responses were minimal and accounted for during data analysis and reporting. Open-ended question responses were collected and analyzed by evaluators in the following way. An evaluator coded the qualitative responses from the surveys in following three steps: 1) reviewed survey responses and identified major themes; 2) identified sub-themes within each theme; 3) examined the survey responses for outliers (cases that appear to lead in the opposite direction than the findings). Throughout the qualitative analysis of all surveys no outliers were identified. Qualitative findings were found to be consistent across youth, parent/caregiver, provider, and school staff surveys. However, there were times where different themes were emphasized more strongly by a particular respondent group. These cases were noted and discussed in the qualitative analysis.

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KEY FINDINGS: QUANTITATIVE DATA ANALYSIS The following quantitative data analysis is taken from both paper and pencil and online surveys from all participant groups including youth, parent/caregivers, school staff, and providers. Using online and paper and pencil surveys includes a wider distribution of respondents across socioeconomic classes and technological capabilities. The following numbers of paper and pencil surveys were collected by MCDPH staff and entered into the online database: 47 youth surveys, 30 school staff surveys, 60 parent/caregiver surveys, and 24 provider surveys. The majority of surveys (58%, n=222) were completed online including the following: 2 youth, 117 school staff, 56 parent/caregiver, and 47 provider surveys. All surveys combined, MCDPH received a total of 383 surveys: 49 youth, 116 parents, 71 providers and 147 school staff surveys. Survey Demographics. As demonstrated by Figure 2, female participants were at least five times greater than male participants across all surveyed groups except the youth group, and as much as 11 times greater than male participants in the parent group. Age. The largest percentage of participating parents were 40 to 54 years of age (40%), followed by 34% parents who were 26 to 39 years of age and 16% who were over 55 years old. Most of the youth were between 15-17 years (n=28, 56.0%) and 18-20 years (n=17, 34.0%). The remaining respondents were 21 years or older (n=5, 10.0%).

Figure 2. Participants by Gender As a whole, female participants outnumbered male participants.

29 9 12 16 20

107

59

131

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40

60

80

100

120

140

Youth Parent Provider School Staff

Male Female

Figure 2. Participants by Gender As a whole, female participants outnumbered male participants.

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Race/Ethnicity. Across all groups the majority of participants reported being White/Caucasian (parents/caregivers=88%; school staff=85%; providers=72%; and youth=66%). A very small percent reported being Hispanic/Latino (youth=20%; providers=16%; school staff=8%; and parents/caregivers=4%); Native American (youth=10%; parents/caregivers=6%; providers= 4%; and school staff 3%) or other (provider=8%; youth=4%; school staff=4%; and parents/caregivers=3%). Work Experience of Providers and School Staff. Providers indicated they provide services in a wide range of areas including behavioral and social services, medical and specialty care (e.g. respite, physical therapy), legal representation, and health insurance. Of the 147 school staff participants, 96 were general education teachers (64%) and 34 were special education teachers (23%). The remaining respondents included administrators (n=8, 5.3%), paraprofessional/support staff (n=7, 5%), and nurses (n=2, 1%). Both providers and school staff groups had many years of experience working with children and youth with special health care needs. The average time on the job for providers was 12.6 years; while 63% of school staff members reported working between three to nine years (n=92) in their job and 36.3% having ten or more years of experience in their current position (n=53).

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Location/Setting. School staff primarily worked in the surrounding areas of Bullhead City (n=56, 37%), Kingman (n=53, 35%), and Lake Havasu City (n=35, 23%). Similarly, the majority of providers worked in these three regions, and the majority of youth and parents/caregivers sought services from providers in these areas (Figure 3). Figure 3. Location of Providers The largest number of provider respondents reported offering services in Kingman, Bullhead City, and

Golden Valley.

CYSHCN. When asked to report their diagnoses, youth responded with a range of conditions concerning cognitive, developmental, physical, emotional, and behavioral challenges. Examples of specific diagnoses included Autism Spectrum Disorders, Attention Deficit and Hyperactivity Disorders (ADHD), learning disabilities, speech impediments, seizures, muscular atrophy, blindness, deafness, and paralysis. It is important to note many youth were unable to complete the survey due to limitations of their special health care need and therefore not included in this analysis.

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21

22

33

33

38

42

49

52

0 10 20 30 40 50 60

Yucca

Chloride

Peach Springs

Oatman

Dolan Springs

Topock

Mohave Valley

Fort Mohave

Lake Havasu City

Golden Valley

Bullhead City

Kingman-Butler

Number of Responding Providers

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Overall, youth did not feel their disability prevented them from going places (n=40, 80%) nor did the majority feel there were additional things they needed to stay healthy (n=39, 78%). Half the youth (n=25, 50%) said their disabilities do not inhibit them from participating in activities. But, those who said they are limited, reported they experience the following: (a) learning/cognitive difficulties such as focusing, reading, or quickly learning new concepts; (b) physical challenges like playing sports or driving; and (c) behavioral challenges such as handling social circumstances or making healthy decisions. Of the 49 youth participants, 40 said they learned how to care for their disability from someone in their family (80.0%).

Parents/caregivers reported more male children with multiple diagnoses than females (65% vs. 35% respectively); however, these differences were not statistically significant. When looking at separate diagnosis, 24% of children had physical challenges (n=28), 35% had behavioral issues (n=41), and 70% had developmental or genetic diagnosis (n=82). Over 62% of the parents (n=73) reported their child was limited or prevented in some way in his/her ability to do the things most children of the same age can do. Of the youth surveyed, half reported being limited in the same way. Again, many youth were unable to take the survey due to limitations of their special health care need and were not included in the analysis. Parents/caregivers sought services for their CYSHCN in largely the same areas as providers reported working (Figure 4). Figure 5 compares each

Figure 4. Where CYSHCN Seek Services, According to Parents/Caregivers and Youth These are the same regions where the majority of providers and school staff work.

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1

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7

17

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22

28

30

51

0 10 20 30 40 50 60

Other

Las Vegas

Flagstaff

Phoenix

Bullhead City

Lake Havasu

Kingman

Number of Respondents

Parents/Caregivers Youth

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group’s (parents/caregivers, providers, school staff) perception of the diagnoses/conditions of the CYSHCN they work with. It is important to note, respondents were asked to mark all pertaining conditions. Interestingly, more parents/caregivers reported their CYSHCN experienced more developmental impairments such as autism, cognitive delays, and learning disabilities. A greater number of school staff worked with CYSHCN who have behavioral problems such as Attention Deficit and Hyperactivity Disorder. On the other hand, the same number of providers reported working with CYSHCN that have conditions from each category (developmental, medical/physical, mental/emotional, and behavioral) Figure 5. Youth Diagnoses According to Group Surveyed Participants were asked to mark all conditions/diagnoses that applied.

112

118

105

78

41

44

32

38

58

70

61

119

0 20 40 60 80 100 120 140

Mental/Emotional

Behavioral

Medical/Physical

Developmental

Mental/Emotional

Behavioral

Medical/Physical

Developmental

Mental/Emotional

Behavioral

Medical/Physical

Developmental

Sch

oo

l Sta

ffP

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der

sP

aren

ts/C

areg

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Number of Respondents

Similar numbers of providers work with CYSHCN with diagnoses across all categories.

Majority of parents/caregivers say their child has a developmental disorder.

More school staff members work with CYSHCN with behavioral and mental/emotional conditions.

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Insurance Coverage. Reported household income varied largely from less than $10,000 to over $90,000, with an average household income of $40,000 to $50,000. The majority of parents/caregivers (n=77, 66%) said their CYSHCN was covered by public insurance (AHCCCS, ALTCS) compared to those receiving private health coverage (n=45, 39%) such as Aetna, Cigna, or United Health Care); and five of the 116 parents/caregivers said they did not have access to health insurance (Figure 6). CYSHCN who qualify for DDD services are also eligible for public health insurance.

When asked to identify

the different types of insurance programs accepted by their agencies, slightly more providers said their agency does not accept insurance and/or services are free (n=38, 39%) than those who accept private insurance (n=27, 28%), public insurance (n=25, 26%), and Tricare (n=7, 7%). See Figure 7 for comparisons of insurance accepted by providers. Quality and Coordination of Care. Youth were asked

Figure 6. Insurance Type as Reported by Parents/Caregivers Twice as many parents/caregivers receive public health insurance than those who receive private health insurance.

Figure 7. Insurance Type Accepted by Providers The number of providers is fairly consistent among groups of accepted insurance.

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45

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0 50 100

No InsuranceCoverage

Private Insurance

Public Insurance

Number of Parents/Caregivers

7

25

27

38

0 10 20 30 40

Tricare**

Public Insurance

Private Insurance

No Insurance*

Number of Providers *Provider does not accept insurance and/or is able to offer free services through other funding. **Tricare is health care for military dependents.

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to indicate the different areas they learn how to care for their disability. Of the 47 youth who responded, the following sources were identified: parent/caregiver (n=29, 62%), someone in their family other than a parent/caregiver (n=23, 49%), themselves (n=13, 28%), school (n=12, 26%), and online/social media (n=2, 4%). Seven out of ten youth (n=25, 70%) said their parents/guardians schedule their health care appointments. Parents/caregivers said to receive health-related information from their doctors, online sources and social media, their child’s school, the local library, Tribal services, and the State Department of Public Health. In addition to themselves, parents/caregivers reported that they receive help coordinating their child’s health care services from the following: family members (n=50, 43%), schools and social services (n=38, 32%, respectively), doctor’s office (n=33, 28%), mental/behavioral case worker (n=31, 26%), agency case worker (n=14, 12%), and social workers (n=9, 8%). A very small number of parents also mentioned receiving service coordination help from churches, parent support groups, and Child Protective Services. Of the 116 parents/caregivers, 17 (14%) said nobody helped them arrange health services for their children.

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Types of Services. Parents/caregivers indicated their children needed a wide range of services such as: dental, speech, counseling, occupational therapy, physical examinations, and holistic or alternative approaches (Figure 8). When asked separately about their need for respite services, an equal number of parents/caregivers reported not needing respite services (n=42, 36%) and desiring services as needed (n=41, 35%). From those who need regular respite services, 15% desired help in the afternoon (n=18), followed by 14% who desired help in the evening (n=17), 10% who wanted overnight respite care (n=12), and 7% who desired morning services (n=8). Figure 8. Types of Services Desired by Parents/Caregivers for Their Child Most parents/caregivers wanted dental and speech services for their child.

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28

28

29

35

49

49

52

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Holistic Care

Vaccinatios

Vision

Physical Therapy

Physical Exams

Counseling

Occupational Therapy

Speech

Dental

Number of Parents/Caregivers

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A number of parents/caregivers also expressed a desire for childcare services for their CYSHCN. Over 15% wanted services during the week (n=18), mostly in the afternoon (n=16, 14%), followed by the morning (n=13, 11%), and evening (n=12, 10%). A small number (n=5, 4%) reported needing childcare overnight. However, the majority of parents (n=69, 59%) reported not needing childcare services. Languages. Providers reported speaking English (n=71, 63%), Spanish (n=25, 22%), American Sign Language (n=8, 7%), and/or other languages (n=8, 7%) when providing services to CYSHCN and their families. Five providers reported using interpreter services, one provider used audio communication devices, and another reported using Tagalog when providing services. While almost all school staff respondents (n-147, 98%) said they spoke English when providing instruction to CYSHCN, some respondents also utilized Spanish (n=23, 15%), American Sign Language (n=23, 15%), and pictures or electronic communication (n=2, 1%). Satisfaction with Health Care Services. About three out of four youth indicated they are happy with the health care services they receive (n=39, 78%). A larger percentage said their doctor talks to them about how to be healthy (n=41, 82%), and even more said they feel safe around the people who care for them (n=47, 96%). Providers and parents were divided when reporting their level of satisfaction with the health care services offered to CYSHCN in Mohave County, with providers expressing less satisfaction. Compared to 84% of parents/caregivers (n=97) who reported being somewhat to very satisfied with services, fewer providers were satisfied with services (n=16, 23%). In fact, the majority of providers (n=26, 37%) reported being somewhat to very dissatisfied with services; 33% were neutral (n=23). The type of insurance coverage did not impact parents/caregiver’s level of satisfaction with services. Almost 47% of families with public insurance (n=26) were satisfied with health services received, compared to 42% of families with private insurance (n=7).

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Satisfaction with School-Related Services. Almost half of all parents/caregivers (n=57, 49%) reported being somewhat dissatisfied to very dissatisfied with the educational services received by their CYSHCN. Over half (n=66, 56%) believed the Individual Education Program (IEP) process could be improved. Of the 147 school staff surveyed, 31% (n=46) said they were somewhat dissatisfied to very dissatisfied with the educational services available to CYSHCN. Like parents/caregivers, half of the school staff respondents (n=75) said they felt the IEP process could be improved. Most school staff (n=99, 66.0%) said they did not offer specific education or materials; 38 staff respondents (25.3%) said these materials were provided mostly through informational handouts, packets, and flyers.

Adequacy of Training. Over half of providers (n=46, 65%) and school staff (n=55%, n=82) felt they were adequately trained and prepared to effectively care for and/or teach CYSHCN (Figure 9). On the other hand, around a third of providers (n=20, 28%) and 44% of school staff did not feel adequately prepared/trained (n=66) (Figure 9).

A little over half of

66

82

20

46

0 20 40 60 80 100

Not Adequately Trained

Adequately Trained

Not Adequately Trained

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Figure 9. Adequacy of Training (Self-Report) More providers and school staff felt adequately prepared than those who did not feel adequately prepared.

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providers (n=39, 55%) and 41% of school staff felt the staff at their agencies/schools was adequately trained to care for/teach CYSHCN (n=61). Equally, a third of providers (n=22, 31%) and 81 (55%) of school staff surveyed felt other employees at their agencies/schools were not adequately prepared to effectively care for/teach CYSHCN. Figure 10 highlights these findings.

An equal number of

parents/ caregivers were satisfied (n=48, 43%) as were dissatisfied (n-=45, 41%) in the adequacy of provider knowledge and training. Parent/caregivers who were not satisfied mentioned the provider did not understand the child’s developmental, emotional, or behavioral needs.

Barriers to Health Care Services. Providers and parents/caregivers identified a number of obstacles to providing and/or seeking care or services for children and youth with special health care needs. Figure 11 present the results. In a question asking respondents to “mark all obstacles that apply,” almost every provider surveyed (99%) felt CYSHCN and their families faced difficulties in receiving effective care because they did not know how to navigate the system. A large majority of providers (68%) also felt insurance issues created barriers to access to care. A large number of parents/caregivers (n=48, 41%) reported that cost was an obstacle to acquiring services for their CYSHCN. Almost 37% (n=43) mentioned health care plan

Figure 10. Perceived Adequacy of Training of Other Staff More providers and school staff felt adequately prepared than those who did not feel adequately prepared.

81

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Staff Not Adequately Trained

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limitations as a barrier; 57% (n=65) reported that services were not available in their area; 23% (n=27) said the child’s provider does not know how to provide care; and 5% (n=6) said that their child refuses to go to the appointments. Figure 11. Obstacles CYSHCN and Their Families Face When Receiving Services, According to Parents/Caregivers and Providers

* Lack of knowledge concerning where to obtain services, lack of resource guides ** Inadequate or no insurance coverage, difficulties with health plan Note: respondents were given a list of obstacles and asked to “mark all that apply”

Barriers to School-Related Services. The majority of school staff agreed educational services for CYSHCN faced challenges related to costs, lack of resources, and the absence of specialty schools (Figure 12). Similarly, 38% of parents/caregivers felt the

31%

49%

20%

13%

41%

68%

37%

52%

31%

48%

99%

41%

57%

6%

23%

38%

53%

14%

31%

4%

20%

50%

Cost

Lack of services in the area

No dental or vision

Lack of provider training

Lack of school resources

Insurance issues**

Lack of transportation

No respite/child care

Cultural/language barriers

Shortage of providers

Difficulty navigating system*

Parents Providers

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scarcity of educational resources was a hindrance on educational services for their children. Figure 12. School Employees’ Perceived Obstacles in Providing Quality Care to CYSHCN

The majority of school employees felt the quality of educational services for CYSHCN faced barriers related to cost, lack of resources, and the absence of specialty schools.

Handicap accessibility was also a major concern among school staff as well as youth. For example, six out of ten school staff members said their school did not have a wheelchair accessible playground. One out of four youth said they were not able to use the playground where they lived and nine youth specifically stated they wished playgrounds had handicap-friendly amenities such as wheelchair swings, walking paths, shaded areas, and bigger playground equipment. Parents/caregivers corroborated these findings as only 103 of the 116 parents/caregivers (87%) said they did not have a playground in the area with accommodations for CYSHCN.

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18

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32

66

76

79

0 20 40 60 80 100

No language interpreter available

Cultural barriers

Lack of transportation

Child refuse to participate/attend

Speciality schools unavailable

Lack of resources

Cost is a limiting factor

Number of School Staff Members

Note: Respondents were provided a list of obstacles and asked to mark all that apply

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Recommendations. The greatest amount of providers indicated that specialty services (e.g. developmental pediatricians, autism specialists, respite care, neurologists, feeding therapists, occupational therapy) were the most important services for CYSHCN and their families that are currently unavailable in their towns. Other services mentioned included: socialization and community activities for CYSHCN, licensed nurses in schools, parent training for diagnoses and behavior management (e.g. Positive Reinforcement Training), qualified interpreters, national credentials for deaf and hearing impaired children, specialized child care, and transportation services. In order to provide CYSHCN and their families greater access to care, numerous providers suggested the SNAC Coalition focus its efforts on the following: coordinating networks and interagency communication; creating greater awareness of resources; increasing training opportunities for parents/caregivers, providers, and school staff; establishing a center, afterschool program, and camp for CYSHCN; and increasing school and community resources.

KEY FINDINGS: QUALITATIVE DATA ANALYSIS The majority of data for the following qualitative data analysis came from responses from open-ended survey questions in the youth, parent/caregivers, school staff, and provider surveys. However, responses from eight key informant interviews with parent/caregivers as well as feedback on IEPs from a parent/caregiver support group were also included in the following analysis. Examples from survey responses, interviews, and support group feedback were used to illustrate themes. Major Themes

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Three major themes emerged from the qualitative analysis of the open-ended responses of all surveys (parent/caretaker, providers, school staff, and youth), parent/caregiver interviews, and parent/caregiver group:

1) Access to services 2) School environment 3) Training and education

Each of these themes is broken into subthemes and explored with quotes from survey responses to illustrate findings. Aside from the youth, who did not discuss in great detail the need for training and education, the major themes and subthemes were found to be consistent across all respondent groups.

1. Access to Services

A major concern among all groups surveyed was the lack of access to care resulting from Mohave County’s remote location. Within the theme of access to services, the following subthemes were identified: service providers, specialty services, family support programs, socialization and physical activity, and health care coverage.

a. Service Providers

In addition to discussing the limited number of primary health care providers, respondents spoke about a scarcity of providers within their immediate location who were knowledgeable about developmental disabilities and children with special needs. Similar reports were shared about families having to travel two to three hours across state lines to access routine behavioral health and medical care. If these providers did not accept AHCCCS, families would sometimes have to travel four to five hours to Phoenix Metro area. Time, transportation, and budgetary constraints associated with

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all day travel created additional burdens for families seeking appropriate care for their children. Due to the few providers located in Mohave County, local physicians often had long waiting lists whereby immediate care for acute medical concerns was hard to obtain. A few behavioral therapists reported traveling two to three hours to visit families and reported feeling overwhelmed due to unmanageable caseloads. Similarly, some parents talked about traveling five hours to Phoenix to obtain care for their children. The quotes below demonstrate the need for more providers in Mohave County who are trained and culturally competent to work with CYSHCN.

“I think they should learn their role as a primary care doctor for special needs children… I would like them to feel comfortable around someone with special needs.” ---

Parent/Caregiver “We are all spread to thin and the geographical region is so large to travel that many therapists are on the road for more than half of the day. Hate that kids have to be air vac’d out of here and that our kiddos with high-risk health problems have to travel 3.5 hours to Phoenix for specialized care! “---Provider “It is difficult to find qualified personnel that have experience dealing with special needs children in this area.” ---School staff member

b. Specialty Services

Table A. Desired Specialty Services

(According to the number of times mentioned in open-ended responses)

Respite & Daycare (55)

Speech Therapists (51)

Behavioral Therapists (52)

Occupational Therapists (42)

Physical Therapists (27)

Pediatric Sub-specialties (27)*

Sign language interpreters (24)

Developmental Pediatrician (21)

Autism Specialist (15)

Vision Specialist (12)

Child Psychologist (12)

Sensory Integration (9)

Orthopedic (8)

Hearing Specialist (8)

Transportation (8)

Dental (7)

Alternative Therapies- Art, Music, Play (6)

Neurologist (5)

RAD Specialist (5)

Feeding Therapist (3)

Child Rehabilitation Services (3)

Urgent Care/ER (2)

Nutritionist (1)

Note: Pediatric Sub-specialties includes gastroenterologist, neurology, urology, surgeon, ophthalmology, genetics, ENT, cardiologist, endoscopy)

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Overall, respondents expressed the need for a myriad of specialty services from developmental pediatric care to alternative behavioral therapies. Among the most commonly cited services needed in Mohave County for CYSHCN and their families were respite, daycare, and speech, behavioral, occupational, and physical therapies. A youth remarked that he/she “cannot get hearing aids but there’s no one to sign with.” Respondents also talked about the need for specialty pediatric services such as pediatric neurology, urology, surgeons, and cardiologists who understand issues pertaining to CYSHCN. Table A lists the specialty services desired by respondents. “Our specialists in greater Phoenix area are amazing but we have NOTHING here that children with ASD [Autism Spectrum Disorder] NEED! We have decided to move if things don’t improve by Fall 2015!” ---Parent/Caregiver “There are no doctors in this area that provide diagnostic services for autism.”---School staff member “There is a great need for more specialists such as child psychologists, speech pathologists, OT [Occupation Therapist], PT [Physical Therapist] providers and especially ones that know how to work with children with special needs.” ---Provider

c. Family Support Programs

Expressed across all groups was the added emotional stress likely to occur when caring for a CYSHCN. Several parents/caregivers shared common fears about the day they would no longer be able to care for their loved one. Many parents/caregivers spoke about frustrations working with schools to advocate for their child’s needs. Both providers and school staff recognized the daily sacrifices parents/caregivers make on behalf of their CYSHCN. All three groups (parents/caregivers, providers, and school staff) emphasized the importance of providing an outlet for parents/caregivers through

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parental support groups and family counseling. Self-care was an important theme to prevent burnout among parents/caregivers. In addition to helping parents/caregivers process their emotions, support groups would also serve as an opportunity for parents/caregivers to share resources and advice. “A hotline for help in understanding parents needs and frustrations so they do not give up helping their children.” ---School staff member “A support group/counseling that is aimed at the 0-3 population and dealing with grief when their child is initially diagnosed.” ---Provider

d. Socialization and Physical Activity

A few students who completed the survey said they wished they had activities to do on the weekends, and more specifically, activities for children who were blind and/or deaf. Parents/caregivers also mentioned having more opportunities for CYSHCN to have fun and socialize outside of the school environment. Several parents/caregivers felt their child was discouraged from participating in extracurricular activities at school and recalled times their child was purposefully separated from mainstream students during school recreational events. Providers talked about the need for activities that would help CYSHCN feel less isolated. Suggestions for promoting socialization and physical activity for CYSHCN included: a pool area for special needs, CYSHCN play groups and field trips, CYSHCN mentorship programs, handicap accessible playgrounds, special needs camp or day programs, and Special Olympic Tournaments. “Social groups that are smaller and better supervised by TRAINED workers outside of school, based on interest, not just the fact that they qualify for DDD funds.” ---School staff member

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“Special needs kids should be allowed to join in school activities like sports, instead of getting discouraged not to. Other than Special Olympics.” ---Parent/Caregiver “Many recreational areas, sports fields are not very handicapped/wheelchair friendly. The bathrooms are not accessible, the terrain is difficult to maneuver through to watch family members and friends play a sports game.” ---School staff member

e. Health Care Coverage

A common theme among all groups was the difficulty of obtaining affordable health care coverage for CYSHCN. Respondents frequently discussed difficulties navigating the health care system, particularly in obtaining social security disability benefits and affordable health insurance. “Too many ropes to climb” reported one parent/caregiver. Due to frequent changes in public health coverage policies, most respondents knew a CYSHCN who lost medical services because they were cut from state care or because their provider no longer accepted their coverage. Respondents reported having trouble getting mental health services covered. Other participants reported the difficulty of getting services without a specific diagnosis and the additional challenge of receiving these diagnoses when some children may present as “too high functioning.” A few respondents also spoke about challenges youth faced once they aged out of covered care. Parents/caregivers reported a lack of follow-through and long wait times for preauthorization from insurance companies. Additionally, it was difficult for CYSHCN covered by AHCCCS to receive services from out-of-state providers, such as those in Las Vegas and Utah, who may be closer to Mohave County than those in Phoenix. “My son doesn’t qualify for state funded insurance because he is too ‘high functioning’ and he doesn’t qualify under a financial need because my husband makes too much money. The only services available in Kingman are to those on AHCCCS, and so we feel that we are being punished for working so hard with our son at a young age and for my husband attending 12 years of post-high school higher education.” –Parent/Caregiver

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“Very dissatisfied with state services. Denied year after year because he isn’t diagnosed with mental retardation and they don’t think he is in immediate need.” –Parent/Caregiver “…qualifying for services is difficult for parents and they typically give up on the process. Parents or caregivers do not know how to navigate the system. Social Security benefits are pretty much impossible to acquire. Ultimately, parents are left with self-pay therapy and care for their child which result in high costs and travel time.” ---School staff member “The requirements to get services from DDD [Division of Developmental Disabilities] were hard to get through. He had to have a major melt down and regress before he was accepted.” ---Parent/Caregiver

2. School Environment Within the major theme of school environment, the following subthemes were identified: special education and related services, communication, and resources and funding.

a. Special Education and Related Services As previously discussed, federal mandates such as the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act of 1973 ensure all public school students with disabilities receive special education and related services to achieve their greatest learning potential.9 When students meet the disability criteria designed by IDEA or Section 504, the school is responsible for developing an Individualized Education Plan (IEP) and providing that student with special education and related services. Survey responses from parents/caregivers, teachers, and providers as well as parent/caregiver interviews, and parent/caregiver group feedback suggest improvements can be made to how public schools identify, evaluate, and provide these accommodations to CYSHCN.

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Difficulty Qualifying for Services. Respondents from all groups acknowledged an overall school resistance when identifying students who need extra assistance. The general sentiment among respondents was schools “pushed students under the rug,” ignoring and/or prolonging intervention when students presented additional learning needs. According to a few providers and school staff, there are limits to the number of children eligible for special education and academic supports. As a result, schools can be reluctant to share services offered to CYSHCN. Several parents/caregivers spoke about broken promises where the school diagnosed their child or established an IEP but failed to implement the plan. In many cases, such as with autism, students needed to have a medical diagnosis before qualifying for special education. As previously discussed, many families have a hard time obtaining immediate diagnoses and therefore, experience delays in receiving appropriate educational services. “Schools are rude, unprofessional, do not follow IEP’s, try to change child’s DX so they do not have to provide IEP services.” ---Parent/Caregiver “The process, currently, limits the number of children eligible for special services. We have so many students who would greatly benefit from IEP, but the current legislation and processes hinder their ability to qualify.” ---School staff member IEP Complexities. School staff and parents/caregivers expressed frustration with the complex and lengthy IEP process. When asked what could be improved with the IEP process, both parent/caregiver and school staff respondents felt the initial screening phase could be more efficient so students did not miss opportunities for support. School staff discussed how the IEP form was too long and time consuming. Several school staff said their IEP plans ranged from 20-30 pages, and as a result felt valuable time was taken away from the classroom. Parent/caregiver respondents were more likely to find the IEP forms cold and informal. Some noted the legal jargon was intimidating and hard to comprehend, and that “If it was simpler parents would feel more comfortable participating.” Others felt the

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abundance of paperwork took attention away from their child. Many parents/caregivers were also vocal about the perceived uselessness of the IEP meetings. A few respondents felt intimidated by the number of people present at the meetings, and wished they received instruction on how to better assist IEP plans during such meetings. Another common complaint among parents/caregivers was the need to have more realistic goals reflective of their child’s needs. “All of my IEPs are over 20 pages long some are up to 30 pages. This seems to be an abundance of information and wasted paper. Teachers would rather spend time with the students than filling out paperwork.” ---School staff member “Making parents aware that they have a say in goals, and don’t have to go with the unreal ones the teachers make.” ---Parent/Caregiver Accountability. The lack of IEP follow-through was a concern among providers and school staff, but even more so among parents/caregivers. Many parents/caregivers felt teachers did not take the IEP plan seriously. A few parents/caregivers recalled witnessing their child isolated in a separate space while the other students were actively working on assignments at their desks. Such stories exemplified parents/caregivers’ fears that their child was ignored or passed through the system. School staff also expressed frustration that CYSHCN were prematurely discontinued from special education. One staff member thought it would be important to include both parent/caregiver and teacher observations before determining the continuation/discontinuation of learning services for CYSHCN. “IEPs are written but nobody takes responsibility for the implementation.” ---Parent/Caregiver “Teacher observation and data should be a deciding factor in the continuation or discontinuation of IEPs instead of solely relying on testing. I’ve personally had several students exited from SPED services who NEED the support and resources to be successful in school.” ---School staff member

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“Also, I do not feel teachers follow the IEP. I feel it is more a meeting they have to do, and then they do as they wish until the parent brings up the IEP guidelines and then HEAVEN FORBID they suddenly say they have been following it all along.” --–Parent/Caregiver “I visited my son at High School on four separate occasions to find him sitting, alone, in a bean bag chair at the back of the ‘self-contained’ classroom, while the other special needs children were busy, sitting at table, doing their work.” --–Parent/Caregiver Individualized Education Programs. Several school staff and parent/caregiver respondents believed the IEP process could be improved if learning goals were more tailored to the student’s individual needs beginning with more individualized assessments to correctly identify the student’s greatest needs and capabilities. According to a few staff members, the current IEP design is based on a standard formula and therefore can be too vague and “does not benefit the student.” Rather, many staff and parents/caregivers think it would be more beneficial to have student and parent collaboration in goal formulation and evaluation. This process would facilitate better communication with parents/caregivers, empower students, and ensure goals are realistically obtainable. Also discussed was how a recent emphasis on the common core prevented teachers from incorporating diverse learning styles into instruction. “With the current common core- the teachers are teaching to the test. They no longer can help the students in their classes learn in special ways each of their students need.” ---Parent/Caregiver “The goals created in the IEPs are vague….the numbers just seem like a way to check something off in a list of requirements, but it doesn’t give the teacher a good idea of where this student was performing before, or what their challenges in completing this goal are.” ---School staff member

b. Communication

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Involvement of Parents/Caregivers. Findings across all school staff, provider, and parents/caregiver respondents suggested communication could be improved between all stakeholders in the care of CYSHCN (paraprofessionals, teachers, parents/caregivers). Parent/caregiver involvement in their child’s education was a great concern for all participant groups. Both school staff and parents/caregivers mentioned schools have a tendency to ignore parents/caregivers even though, as one parent mentioned “we know our children better than they do.” As indicated by one staff member, schools have a tendency to meet parents/caregivers “with disdain, as they are an annoyance and treated as sub par.” “Many times they don’t listen to what parents are saying. They spend only a short time with them then assume they know more about your child than you do.” ---Parent/Caregiver “My son didn’t qualify for a disability IEP but he did for a behavioral. The school didn’t tell us that and they give you as little information as possible.” ---Parent/Caregiver School staff and parents/caregivers presented several suggestions on how to improve communication between schools and parents/caregivers. The most common suggestion was to inform parents/caregivers about the special education laws and the “legal rights that parents and children have” to receive special education and related services. During such forum, schools could outline procedures for parents/caregivers to communicate with the school about their child’s needs. “A forum that is not defensive AGAINST the schools, but helps them know how to work WITH the schools. We can only do so much, and sometimes parents are misled to what they THINK they have a right to at school.” –School staff member It was also suggested that schools develop methods, perhaps through online forums, for parents/caregivers to communicate with their child’s teachers on a regular basis. This additional avenue of communication would help parents and teachers monitor the progress and on-going needs of CYSHCN. Another idea was for teachers and

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parents/caregivers to meet prior to the start of the school year to review the CYSHCN’s behavior and learning needs. A few staff members said it usually took them about two months before realizing certain students needed additional assistance. Meeting with parents/caregivers of CYSHCN before the start of the academic year would help ensure CYSHCN receive appropriate supports in a timely manner. CYSHCN Advocate. Given the complexities of the IEP process and the special education laws, parents/caregivers, providers, and school staff presented the idea of designating a CYSHCN advocate within the school system. This person would act as a liaison between schools and parents/caregivers “to help parents know their rights and navigate the special education process.” They would be knowledgeable about the diverse range of special health care needs as well as the different academic services available to students. Such person would also act as a gatekeeper to community-based health care services for CYSHCN and as a “spokesperson” for parents. Parents/caregivers could consult with the CYSHCN advocate about resources and ways to best support their child.

c. Resources and Funding

Providers, school staff, and parents/caregivers identified the need for more funding to provide high quality special education and related services. Funds would be allocated to staff experienced in working with CYSHCN and could facilitate supplemental academic services such as speech therapy and after school programs. “I was told the school does not have funding and children with medical needs should be home taught.”---School staff member Qualified Staff to Work with CYSHCN. In addition to limited school funds, respondents (school staff, parents/caregivers, and providers) talked about how difficult it is to attract and retain qualified personnel to Mohave County due to its remote geographic location and lack of financial incentives. As a result, respondents felt class sizes were too large. Given the large number of students with special health care and behavioral needs many teachers were overwhelmed and had difficulty managing class behaviors even when they had a classroom aide. School staff added that this was

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especially difficult because “aid[e]s do not have sufficient training” and they are not paid enough to stay very long in the job. When teachers cannot give students adequate attention, respondents felt the performance of the entire class decreases and CYSHCN are more likely to fall through the cracks. Both school staff and parents/caregivers feared students with behavioral and emotional disabilities might physically harm other students if they did not receive specialized attention. Respondents wanted to see more aides in the classrooms “classroom that can help the students on IEPs” and in the buses to monitor student behaviors. One parent/caregiver went so far as to request cameras in both classrooms and on school busses when nonverbal children were in the vicinity. “There are more and more children with special needs being mainstreamed into the general classrooms and less resources for us. We used to have paras [paraprofessionals] that were available to assist in the classroom. As school budgets have been cut, so too have the related services and positions to effectively mainstream students.” ---School staff member “I can only speak for my Autistic boy who: has violent outbursts, meltdowns, wanders (will look for any opportunity to run through any unlocked door, away from caregiver) hits himself and others, and will find inappropriate things to play with. Therefore, a knowledgeable 1:1 aide is needed at all times to keep him on task.” ---Parent/Caregiver

The higher caseloads may contribute to the schools reported hesitation to identify and provide special education to students who present the need for additional learning supports. In order to provide services to every student requiring special education assistance, teachers reported they need more qualified staff to screen students, complete IEP paperwork, communicate with parents, run the IEP meetings, and provide additional support. Most teachers said this was too difficult to handle in addition to their other teaching responsibilities, which

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results on “the students not getting the services they require.” Parents/caregivers wanted to see their children have longer therapy sessions and more frequent visits. However, due to limited resources, specialized attention for each student is limited. Parents/caregivers as well as teachers also suggested having a full-time nurse at each school. “Very little speech therapy per week ½ hour is NOT enough.” ---Parent/Caregiver “More qualified staff to have more SPED time allotted during the school day. Receives minimal time with resource teacher…I feel that the special ed teachers are well equipped, but the gen ed [general education] teachers need more support (possibly aids in classroom with special needs children, additional education, additional funding to get supplies needed to help these students with unique challenges).” ---Parent/Caregiver Additional School Services. While CYSHCN receive special education classes, parents/caregivers, providers, and school staff were calling for additional school services to support the growth of CYSHCN. Table B below lists respondents’ recommendations.

Table B. Recommended School Services for CYSHCN

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Employment and Transitional Programs. School staff and providers mentioned the importance of offering more transitional or school-to-work programs for CYSHCN. “I would like to see a network of employers who would be willing to use our high school students as volunteers with a job coach. Which could possibly lead to internships or future employment,” noted one school staff member. Another suggested job coaching, after school training, shadowing, and vocational rehabilitation during students’ school years in order to prepare them for work. Not only would these opportunities provide a sense of accomplishment but they would also help ensure CYSHCN would have independence and community involvement after high school. “I think outside agencies like Vocational Rehab should be invited to the first transition IEP.” –School staff member “Supported employment opportunities for high schoolers with special needs.” ---Provider “There is a lack of work programs for children that graduate from high school with Mild, Moderate, or Severe disabilities.” –School staff member

Speech and language therapies

After school programs for CYSHCN

Qualified ASL interpreters

Schools that teach ASL along with verbal class

Counseling at schools

Full-time nurse

Proper screening

Specialized instruction for students with severe behavioral, emotional and cognitive disabilities

Visual/hearing impairment support

More observation of classrooms

Services for severely emotionally disabled and/or dangerous students

Special school or center to work with autism (Autism Center, Autism School)

Tutoring center, tutoring programs

Longer time for assignments

Smaller group testing for CYSHCN

CYSHCN have a say and defined role in their services and educational plans

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3. Training and Education

Within the major themes of training and education, the following subthemes were identified: coordination and awareness of resources, community awareness and engagement, parent/caregiver education, and educator and provider training.

a. Coordination and Awareness of Resources

Repeatedly discussed by all respondents (parents/caregivers, school staff, providers) was the importance of having one place where the public could obtain an inventory of services available for CYSHCN. Many parents/caregivers said they were unfamiliar with the diagnoses of their child and would have found it helpful if someone told them the different types of services to best support their child’s needs. Providers and school staff also thought it would be beneficial if families started discussing service options for when their child turns 18. Many teachers said they feel obligated to research service options on behalf of their student’s parents/caregivers, but that this was beyond their teaching responsibilities. “There are other options that should be made available that I as a parent am not aware of and could use some assistance in finding out what could help my child and what was realistically available to him.” ---Parent/Caregiver Respondents listed several ideas for informing the community about services for CYSHCN. Table C highlights ideas for creating public awareness about resources.

Table C. Suggestions for Creating Public Awareness about Resources for CYSHCN

A resource forum at the beginning of the school year for families of CYSHCN

A resource directory/guide

A hotline where the public could call for service referrals

Presentations given by various providers of CYSHCN who speak about their services and programs

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Parent classes

CYSHCN advocate

Public awareness event/fair where providers of CYSHCN have booths with materials about their programs

b. Community Awareness and Engagement

Many respondents across all groups (parents/caregivers, providers, and school staff) thought Mohave County could be more proactive in creating public awareness about special needs and developmental disabilities. Providers recommended community fairs geared towards special needs along with greater outreach efforts to offer more community activities, events, and groups. Parents/caregivers wanted more events and seminars promoting autism awareness. Additionally, parents mentioned the importance of educating first responders (police, fire, ER response teams) about autistic tendencies, especially concerning their risk of wandering. “Need police department to be more knowledgeable about Autistic children and their tendencies; for example, my child will “wander”…some communities have an Emergency Response System for caregivers, police, firefighters and emergency personnel. It has proven to be very effective for Autism and Alzheimer patients.” ---Parent/Caregiver

c. Parent/Caregiver Education

Besides knowledge of resources, many topics were highlighted as important educational opportunities for parents/caregivers: information about developmental disabilities and how to navigate the health care system, training in behavior management skills, education about child safety and feeding support, and knowledge about special education and the IEP process.

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Developmental Disabilities and How to Navigate the Health Care System. Initially, parents/caregivers were likely to have limited knowledge about their child’s diagnosis and were uncertain with how to best support their child’s needs. Several parents/caregivers expressed an interest in learning about developmental and learning disabilities as well as the different types of therapies or services available. Providers suggested it would be beneficial to teach parents/caregivers how to identify signs early on that their child may need additional supports. Further, it was recommended to teach parents/caregivers how to navigate insurance programs, how to apply for social security disability benefits, and how to work with their child’s management team, because as one provider said “many parents do not know that therapies are even an option for their children.” “I don’t know where to go or what he really needs. I’m new to all this and I feel like no one hears my concerns or wants to help my son.” –Parent/Caregiver “Giving the parents the information on the whole referral process so that if the ball is dropped along the way or an insurance company will not authorize the family has the knowledge of how to fight for it and where to start in the process and where to being following up if they haven’t heard anything.” ---Provider Behavior Modification. At times, children with special health care needs, particularly those with autism, can display impulsive behaviors such as meltdowns, wandering, and attention deficiencies. Parents/caregivers repeatedly said they wanted to learn behavior management techniques and ways to cope with their child’s symptoms. Providers thought parents/caregivers might benefit from Positive Reinforcement Training and other behavior modeling strategies. Life Skills, Safety, and Feeding Support. Another topic of interest to parents/caregivers was the ability to care for the safety of their child. Requested by parents/caregivers was knowledge about first aid and CPR training. A few parents/caregivers wanted to learn best practices pertaining to feeding. One provider

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suggested parents/caregivers attend a training provided through WACOG Head Start titled, “What to do when Your Child is Sick.” Such training would discuss when it is necessary to take children to the doctor versus the emergency room. Special Education Laws and IEP Process. As previously mentioned, many parents/caregivers lack knowledge about their child’s right to special education and related services. Survey responses across all groups (providers, parents/caregivers, and school staff) indicated the importance of advocacy trainings to teach parents/caregivers about their child’s rights and how to best communicate with schools to ensure CYSHCN are receiving adequate supports. “Educating the parents on the rights of their children so they understand and know what to ask for especially related to the school setting. Many parents are very overwhelmed and don’t fully know their child’s rights.” ---School staff member

d. Educator and Provider Training

Similar findings were present between school staff and providers. Respondents from both groups said they rarely have opportunities to be trained about developmental disabilities and special needs. When trainings are offered, they are usually based in Phoenix, which can pose a problem due to budgetary, travel, and time constraints. Both providers and school staff said they would like to have knowledge about the most common disabilities and their respective behavioral interventions: autism spectrum disorders, ADHD/ADD, Dyslexia, behavioral and mood disorders, and substance

exposed children. Parents/caregivers would like to see trainings specifically for pediatricians, medical providers, paraprofessionals, teachers, school administrative staff, bus drivers, and first responders (police, fire, ER staff). School staff in particular wanted more knowledge about how to manage disruptive behaviors without triggering CYSHCN. Very few educators had knowledge about special education policies and

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these teachers wanted to receive more information about these laws. Parents/caregivers also thought training on the IEP process would help ensure teachers follow-through on IEP plans. A challenge, however, was school staff already felt overwhelmed by strict time constraints. A few teachers said training would not be beneficial unless it occurred on a routine basis due to frequent staff turnover. They also suggested ways to receive more child-specific information by having meetings with parents/caregivers of and perhaps a specialist in the area of CYSHCN. “We have little training and often do not know of a special need until after the student has been in our classroom for some time.” ---School staff member “Most teachers don’t understand children with disabilities and treat them adversely instead of helping.” –Parent/Caregiver “Dr. admits she does not have knowledge and wants my child to be seen elsewhere but there isn’t any physician available through coverage in our area.” ---Parent/Caregiver

KEY FINDINGS: SCHOOL ACCOMMODATIONS

School staff members were asked to evaluate the ability for CYSHCN to access the school building. In response, the majority of staff members identified three major areas of improvement: (a) wheelchair accommodations, (b) accessible doors and hallways, and (c) handicap-friendly playgrounds. Wheelchair Accommodations. Schools with multiple levels but no elevator made it difficult for students in wheelchairs to travel from one level to another. Instead of an elevator, some schools had ramp access to the second level, but the ramps were often located outside and at the far ends of the building. Handicap accessible bathrooms also seemed to be a common issue. Some teachers mentioned their schools did not have a private handicap bathroom, the doors to the bathrooms were too small for wheelchairs to fit through, and bathroom sinks were too high for students in wheelchairs to use. Described as a “jig saw puzzle,” small classroom space was another barrier for students in wheelchairs to navigate.

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“Our building is two stories and has no elevator. The ramp requires students to go outside, and students must travel from the middle of the school at the rear exit, to a side exit on the far north.” ---School staff member “One girl in a wheelchair needs to have a private bathroom so she can take care of her catheter. This is in violation of the law.” ---School staff member Accessible Doors and Hallways. The absence of automatic doors made it difficult for many students, particularly students in wheelchairs, to enter and maneuver through buildings. Some schools had attendants hold open doors to assist students because the schools “do not have automatic doors or push button doors.” Narrow hallways made it difficult for handicapped students to travel throughout the building, especially when there were large masses of students congregating. Schools tried to overcome these barriers by pairing handicapped students with escorts/student helpers and implementing flexible passing times. “We have addressed the fact that our building is not handicapped friendly. We took our concerns to our administration. I don’t know that anything can or will be done to address those needs.” ---School staff member “One level, large hallways, student helpers (wheelchairs, escorts, etc…) flexible passing times, flexible busing plans, etc…” ----School staff member Handicap-Friendly Playgrounds. The most common complaint among school staff and mentioned by a few youth was that schools lacked handicap-friendly playgrounds. Schools can make playgrounds more inclusive by adding wheelchair swings, ramps to play areas, shaded areas for students sensitive to sunlight and heat, and larger playground equipment for bigger kids. Some youth wanted to see additional amenities added to play areas such as a seesaw and merry-go-round. “We DO lack appropriate playground equipment for those with physical challenges.” ---School staff member

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“Playground is not accessible to all students, especially wheel bound students.” ---School staff member “Our school even has a special wheel chair swing.” –School staff member

RECOMMENDATIONS: MAIN FOCUS OF SNAC

Findings from this report will help determine the future focus of the Mohave County Special Needs Advocacy Coalition (SNAC). With this goal in mind, school staff, providers, and parents/caregivers had the opportunity to share their vision for the focus of SNAC’s work. All groups identified five major priority areas to improve health care and school services for CYSHCN in Mohave County:

1) Needs Assessments: Perform comprehensive needs assessments to better understand the needs of CYSHCN and their families in rural locations such as Mohave County.

2) Coordination and Awareness of Resources: Develop an inventory of services

for CYSHCN in Mohave County and its surrounding areas. Publicize service information increasing awareness among parents/caregivers, providers, teachers, first responders, and other key stakeholders in the care of CYSHCN.

3) Access to Care: Help secure funding, resources, and incentives for more service options for CYSHCN in Mohave County, including specialty services and transitional programs. Advocate for inclusive health care coverage policies for CYSHCN.

4) Special Education and Related Services: Increase training for teachers,

school staff, and parents/caregivers about special education policies and the IEP process. Secure additional resources and funding to improve the quality of special education, to increase the number of students receiving special education and related services, and to enhance communication between schools and parents/caregivers.

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5) Parent/Caregiver Support and Education: Develop parent/caregiver trainings

about developmental and learning disorders, treatment options for common disorders, behavior modification strategies, and how to care for the safety of their child. Additionally, encourage the initiation of parent/caregiver support groups.

NEXT STEPS The Mohave County Community Assessment for Children and Youth with Special Needs (CYSHCN) is available to the public. This is Mohave County’s first comprehensive assessment regarding the needs of this underserved population. The assessment findings will be used as awareness and educational tools to inform all county residents about the needs and barriers that children with special needs encounter every day. The complete assessment is posted on the Mohave County Department of Public Health website (www.mohavecounty.us) and on the Special Needs Advocacy site (www.snacmc.org). Important findings will be highlighted during a Fall public forum (to be scheduled) and press releases are being sent to local publications. Access to the assessment findings will help healthcare providers and community agencies determine service gaps, forecast service areas, identify improvement strategies and advance the quality of care for this often neglected population. The Special Needs Advocacy Coalition (SNAC) will use report findings in development and implementation of a countywide strategic plan to improve the lives of special needs children and youth. 1 NS-CSHCN. (2010). Arizona report from the 2009/10 National Survey of Children with Special Health Care Needs [Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website].

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2 US Census Bureau, Census 2010. Children living in Arizona under age 18. Generated using American Fact

Finder. Retrieved from: http://www.census.gov/2010census/popmap/ipmtext.php?fl=04 , accessed August 6, 2014. 3 US Census Bureau, American Communities Survey. (2012).Health insurance coverage status [S2701]. Generated using American Fact Finder. Retrieved from: http://www.factfinder.census.gov 4 US Department of Health and Human Services. (2014, June 25). Find shortage areas: HPSA by state & county. Arizona, Mohave County. Retrieved from: http://hpsafind.hrsa.gov, accessed July 15, 2014. 5 34 C.F.R. §300.101(c)(1) 6 Arizona Department of Education. (2014, March). AZ Find: Questions and answers about Child Find. Retrieved from: http://www.azed.gov/special-education/files/2011/06/az-find-question-and-answer-document-3-14.pdf, accessed July 15, 2014. 7 National Dissemination Center for Children with Disabilities. (2014). Disability and education laws. Retrieved from: http://nichcy.org/laws, accessed July 5, 2014. 8 National Center for Learning Disabilities. (2014). Americans with Disabilities Act Amendements Act (ADAAA). Retrieved from: http://www.ncld.org/disability-advocacy/learn-ld-laws/adaaa-section-504/americans-disabilities-act-amendments-act-adaaa, accessed July 5, 2014. 9 National Dissemination Center for Children with Disabilities. (2014). Disability and education laws. Retrieved from: http://nichcy.org/laws, accessed July 5, 2014.