mohave-cyshcn-final

1
Children and Youth with Special Health Care Needs:
A Mohave County Community Assessment
Mohave County, Arizona
August 2014

2
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).

3
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

4
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

5
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

6
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

7
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

8
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.

9
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

10
 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

11
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.

12
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
Percentages
State Nation
Note. “Other races” include Hawaiian, Pacific Islander, Alaska

13
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

14
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

15
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

16
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.

17
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 1620
107
59
131
0
20
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.

18
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).

19
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.
12
12
18
21
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

20
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.
9
1
5
7
17
7
11
15
3
11
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

21
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
SchoolStaffProvidersParents/Caregivers
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.

22
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.
5
45
77
0 50 100
No Insurance
Coverage
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.

23
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.

24
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.
25
28
28
29
35
49
49
52
59
0 10 20 30 40 50 60 70
Holistic Care
Vaccinatios
Vision
Physical Therapy
Physical Exams
Counseling
Occupational Therapy
Speech
Dental
Number of Parents/Caregivers

25
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).

26
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
Adequately Trained
SchoolStaffProviders
Figure 9. Adequacy of Training (Self-Report)
More providers and school staff felt adequately prepared than those who did not feel adequately
prepared.

27
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
61
22
39
0 50 100
Staff Not Adequately Trained
Staff Adequately Trained
Staff Not Adequately Trained
Staff Adequately Trained
SchoolStaffProviders

28
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

29
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.
16
18
32
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

30
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

31
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

32
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)

33
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

34
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

35
“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

36
“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.

37
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

38
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

39
“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

40
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

41
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

42
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

43
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

44
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

45
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

46
 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.

47
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

48
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

49
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.

50
“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

51
“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.

52
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].

53
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.

mohave-cyshcn-final

Recommended

Recommended

More Related Content

What's hot

What's hot (20)

Viewers also liked

Viewers also liked (10)

Similar to mohave-cyshcn-final

Similar to mohave-cyshcn-final (20)

mohave-cyshcn-final