Meeting FACES: Preliminary Findings from a Community Workshop for Minority Parents of Children with Autism in Central North Carolina
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| Title: | Meeting FACES: Preliminary Findings from a Community Workshop for Minority Parents of Children with Autism in Central North Carolina |
|---|---|
| Language: | English |
| Authors: | Pearson, Jamie N. (ORCID |
| Source: | Journal of Autism and Developmental Disorders. Jan 2020 50(1):1-11. |
| Availability: | Springer. Available from: Springer Nature. 233 Spring Street, New York, NY 10013. Tel: 800-777-4643; Tel: 212-460-1500; Fax: 212-348-4505; e-mail: customerservice@springernature.com; Web site: https://link.springer.com/ |
| Peer Reviewed: | Y |
| Page Count: | 11 |
| Publication Date: | 2020 |
| Document Type: | Journal Articles Reports - Evaluative |
| Descriptors: | Parent Workshops, Autism, Pervasive Developmental Disorders, Program Descriptions, Family Needs, Health Services, Social Services, Minority Groups, Parent Attitudes, Parent Child Relationship |
| Geographic Terms: | North Carolina |
| DOI: | 10.1007/s10803-019-04295-4 |
| ISSN: | 0162-3257 |
| Abstract: | In North Carolina (NC), there are many resources designed to support the needs of children with autism and their families, and yet a troubling gap in underserved families' access to those services. To address this gap, the Meeting FACES workshop was designed to: (a) provide an opportunity for parents, educators, and service providers to build partnerships, (b) provide parents with opportunities to learn about available autism services in their communities, and (c) assess the needs of underrepresented families of children with autism in NC. Findings indicate that minority families of children with autism in central NC require more supports to access and navigate services. Additionally, participants were very satisfied with Meeting FACES and were interested in participating in future FACES programming. |
| Abstractor: | As Provided |
| Entry Date: | 2020 |
| Accession Number: | EJ1239217 |
| Database: | ERIC |
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| FullText | Links: – Type: pdflink Url: https://content.ebscohost.com/cds/retrieve?content=AQICAHj0k_4E0hTGH8RJwT4gCJyBsGNe_WN95AvKlDbXJGqwxwGr_-xyD1gqh-gG6fGswjLvAAAA4jCB3wYJKoZIhvcNAQcGoIHRMIHOAgEAMIHIBgkqhkiG9w0BBwEwHgYJYIZIAWUDBAEuMBEEDAqnamhPBwFf8vOS8QIBEICBmkldTX-ZlfIdHeavYF8AtmaM9mPx64ly9akoaQEDE4Lis3efjNmMgUAnNGY-aG-XldHG6ORo7smfacL3hgnCRSkg3HqHbcxe55Bh0M87U8rLSV9sy3WOg86ZVhYjhTDtUhvKKw_4l37o-C2D4gNqSp5wy5DQAGxMZbxgAjS4PNMH9sVCyT7HQWihT0uoxkmEXcm4-8I5nLsSR1k= Text: Availability: 1 Value: <anid>AN0141099264;aut01jan.20;2020Jan10.03:51;v2.2.500</anid> <title id="AN0141099264-1">Meeting FACES: Preliminary Findings from a Community Workshop for Minority Parents of Children with Autism in Central North Carolina </title> <p>In North Carolina (NC), there are many resources designed to support the needs of children with autism and their families, and yet a troubling gap in underserved families' access to those services. To address this gap, the Meeting FACES workshop was designed to: (a) provide an opportunity for parents, educators, and service providers to build partnerships, (b) provide parents with opportunities to learn about available autism services in their communities, and (c) assess the needs of underrepresented families of children with autism in NC. Findings indicate that minority families of children with autism in central NC require more supports to access and navigate services. Additionally, participants were very satisfied with Meeting FACES and were interested in participating in future FACES programming.</p> <p>Keywords: Autism services; Minority families; Partnerships; North Carolina</p> <hd id="AN0141099264-2">Introduction</hd> <p>Although previous findings suggested that the prevalence of autism was stabilizing (CDC [<reflink idref="bib4" id="ref1">4</reflink>]; Xu et al. [<reflink idref="bib25" id="ref2">25</reflink>]), we now know that the prevalence of autism has continued to climb among 8-year-old children to 1 in 59 children (CDC [<reflink idref="bib5" id="ref3">5</reflink>]). The CDC has purported that some of this uptick can be attributed to better diagnostic practices and identification of autism among African American children, and among girls, both of whom have been traditionally under-identified and underserved. While these findings are promising, the disparities in autism diagnoses and access to services between white children and black and Hispanic children in the U.S. still persist (CDC [<reflink idref="bib4" id="ref4">4</reflink>]). The primary purpose of this community-engaged research was to implement a workshop to connect minority families of children with autism to services. In addition, our secondary aim was to conduct a needs assessment to better understand minority families' (a) knowledge and use of existing services, (b) satisfaction with available services, and (c) importance of potential services in central North Carolina.</p> <hd id="AN0141099264-3">Autism Disparities in North Carolina</hd> <p>In the state of North Carolina (NC) there exists a wealth of resources designed to support the needs of children with autism and their families. NC has several well-established clinics within research institutions (i.e., University of North Carolina at Chapel Hill and Duke University) that focus on autism diagnostic assessments and the implementation of evidence-based interventions for families (Carolina Institute for Developmental Disabilities [<reflink idref="bib3" id="ref5">3</reflink>]; Duke Health [<reflink idref="bib6" id="ref6">6</reflink>]). Despite the availability of autism services and supports, many families in North Carolina find it difficult to access appropriate services due to poverty, racial disparities (e.g., Young and Rabiner [<reflink idref="bib26" id="ref7">26</reflink>]), and logistical barriers such as transportation (Stanley [<reflink idref="bib23" id="ref8">23</reflink>]).</p> <hd id="AN0141099264-4">Poverty</hd> <p>For many families, the costs of assessments and services for children with autism can be financially burdensome. Findings indicate that even across racial and ethnic backgrounds, services for individuals with autism can be costly and inaccessible (Dymond et al. [<reflink idref="bib7" id="ref9">7</reflink>]; Irvin et al. [<reflink idref="bib9" id="ref10">9</reflink>]). Pickard and Ingersoll ([<reflink idref="bib20" id="ref11">20</reflink>]) found that families of children with autism who come from low socioeconomic statuses (SES) often report needing more information about services, and emphasize that a number of structural barriers impede their ability to meet their child's needs. These barriers include finances, insurance, transportation, wait lists, scheduling, and parents' own knowledge. Moreover, their findings suggest that parents who come from lower SES groups request almost two times as much information as parents who come from higher SES groups. Given these barriers, families are often unable to afford primary or supplementary services for their children.</p> <p>While Pickard and Ingersoll highlighted the impact of low SES among a primarily White sample of participants, we know that among minority families, barriers to accessing services are often exacerbated by poverty and living environment (Reichard et al. [<reflink idref="bib21" id="ref12">21</reflink>]). In NC, more than half of children under the age of 5 years live at or near poverty, and one in seven children live in high poverty neighborhoods. Of those children, African American, American Indian, and Latino children are more likely to live in concentrated poverty than White children. (Bell et al. [<reflink idref="bib2" id="ref13">2</reflink>]). Programs designed to support individuals with developmental disabilities, like the NC Medicaid Home and Community-Based (HCB) waiver, are known to have years-long waitlists before families can enroll (Autism Society of NC [<reflink idref="bib1" id="ref14">1</reflink>]).</p> <hd id="AN0141099264-5">Racial Disparities</hd> <p>Although many families are at risk of receiving inadequate services for their children with autism, African American families face even greater difficulties in obtaining supports (LaClair et al. [<reflink idref="bib10" id="ref15">10</reflink>]). In some cases, ethnic minority parents of children with autism encounter challenges with healthcare providers, service providers, and educators who are not responsive to the needs of their families (Pearson and Meadan [<reflink idref="bib17" id="ref16">17</reflink>]; Pearson et al. in press). Stanley ([<reflink idref="bib23" id="ref17">23</reflink>]), for example, found that despite their efforts to advocate for their children with disabilities, African American mothers in a rural, low-income area in southeastern NC often felt unsupported by school personnel, and that the cold and patronizing school environments made mothers hesitant to ask questions and engage with professionals (Stanley [<reflink idref="bib23" id="ref18">23</reflink>]). Other African American parents of children with autism reported experiencing racial discrimination when attempting to access services; one family was even denied services due to their race (Lovelace et al. [<reflink idref="bib11" id="ref19">11</reflink>]). Finally, in their work aimed to explore factors that impact participation in autism support groups, Mandell and Salzer ([<reflink idref="bib13" id="ref20">13</reflink>]) found that 87% of White families in their study belonged to a support group, while only 2% of Latino participants and 5% of African American participants belonged to support groups.</p> <hd id="AN0141099264-6">Logistical Barriers</hd> <p>In many cases, parents of children with autism face significant obstacles to meeting their children's' needs, and these challenges are further exacerbated for underrepresented families living in rural communities (Stanley [<reflink idref="bib23" id="ref21">23</reflink>]). For example, findings suggest that when families living in rural communities seek support, they face limited access to services and have to travel long distances for services (Mello et al. [<reflink idref="bib15" id="ref22">15</reflink>]). In addition, there is evidence that African American mothers of children with disabilities living in rural, low-income areas face an abundance of barriers to autism treatment and services. These barriers include a lack of community resources in close proximity, lack of public transportation to take children to neighboring communities for services, lack of support groups or support systems for mothers of children with disabilities, and stigma related to their child's disability (Stanley [<reflink idref="bib23" id="ref23">23</reflink>]).</p> <p>While advocating for services is a critical step to accessing services for children with autism, many underrepresented families struggle to do so because of (a) culturally insensitive service provision, (b) parent (or provider) limited experience, (c) confidence, or (d) time (Pearson and Meadan [<reflink idref="bib17" id="ref24">17</reflink>]). Given the complexity of autism and the aforementioned challenges related to equity in access to services, ethnic minority families of children with autism face a great need for parent education, training, support, and advocacy skills (Meadan et al. [<reflink idref="bib14" id="ref25">14</reflink>]; Mueller and Carranza [<reflink idref="bib16" id="ref26">16</reflink>]).</p> <hd id="AN0141099264-7">Meeting FACES</hd> <p>In an effort to address the disparities in access to services and supports for underrepresented families of children with ASD, the first author developed and piloted the Fostering Advocacy, Communication, Empowerment, and Supports (FACES) parent training program and graduated the first cohort of participants (N = 12) in Chicago, IL. FACES is a face-to-face parent training and advocacy program that is delivered across six, 4-h training sessions for a total of 24 h of training and instruction. Given the differences in the composition and needs of families of children with autism in NC, the author then developed <emph>Meeting FACES</emph> to: (a) connect ethnic minority families with services and support for individuals with autism living in central North Carolina, (b) provide parents with an opportunity to learn more about available autism services and supports in their communities, and (c) conduct a needs assessment to learn more about minority families' knowledge, use, and satisfaction with existing services for children with autism in North Carolina.</p> <p>The following research questions were addressed:</p> <p></p> <ulist> <item> To what extent do participants know about community-based autism services?</item> <p></p> <item> To what extent do participants perceive existing services as useful?</item> <p></p> <item> To what extent do participants view potential services as important?</item> <p></p> <item> To what extent do participants feel satisfied with the Meeting FACES workshop?</item> </ulist> <hd id="AN0141099264-8">Method</hd> <p></p> <hd id="AN0141099264-9">Participants and Setting</hd> <p>After receiving approval from the University Institutional Review Board, participants were recruited through local schools, community agencies, and autism organizations across central North Carolina. To recruit participants, the research team emailed school and community-based professionals in nearby counties who serve children with autism (i.e., teachers, speech language pathologists, school psychologists, pediatricians). In the email, the research team described the workshop and attached a flyer. The team asked that these providers: (a) attend the event themselves, if interested and (b) share the information with families who met the criteria via message boards, hard copy flyers, and online communication.</p> <p>Participant inclusion criteria were as follows: (a) parents of or professionals for traditionally underrepresented children with autism and (b) 18 years or older. A total of 59 parents and professionals attended the workshops, and 57 parents and professionals completed the survey. Of those, 78.9% identified as female (<emph>n</emph> = 45) and 21.1% identified as male (<emph>n</emph> = 12). With regard to participant roles, some participants reported multiple roles (i.e., parent and professional). Sixty-five percent of the participants were parent/caregivers of children with ASD (<emph>n</emph> = 37), 15.8% were related services providers (e.g., speech language pathologists, occupational therapists; <emph>n</emph> = 9), 10.5% were teachers, (<emph>n</emph> = 6), 8.8% were community agency representatives (<emph>n</emph> = 5), 5.3% were researchers (<emph>n</emph> = 3), 5.3% reported "other" (e.g., community advocate; <emph>n</emph> = 3), and 1.8% were healthcare providers (<emph>n</emph> = 1). All non-parent/caregiver respondents are referred to as professionals (<emph>n</emph> = 27). Overall, 70.2% of all participants identified as African American (<emph>n</emph> = 40) and, more specifically, 100% (<emph>n</emph> = 37) of the parents/caregivers identified as African American (see Table 1).</p> <p>Participant demographics (N = 57)</p> <p> <ephtml> &lt;table frame="hsides" rules="groups"&gt;&lt;thead&gt;&lt;tr&gt;&lt;th align="left"&gt;&lt;p&gt;Role of respondent&lt;sup&gt;a&lt;/sup&gt;&lt;/p&gt;&lt;/th&gt;&lt;th align="left"&gt;&lt;p&gt;Percent (%)&lt;/p&gt;&lt;/th&gt;&lt;/tr&gt;&lt;/thead&gt;&lt;tbody&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Parent/caregiver&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;64.9 (37)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Related service provider (e.g., SLP, OT, ABA therapist)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;15.8 (9)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Teacher&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;10.5 (6)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Community agency representative&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;8.8 (5)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Researcher&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;5.3 (3)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Other&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;5.3 (3)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Healthcare provider&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;1.8 (1)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Gender of respondent&lt;/p&gt;&lt;/td&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt; Female&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;78.9 (45)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt; Male&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;21.1 (12)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Gender of child&lt;/p&gt;&lt;/td&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt; Male&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;76.9 (30)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt; Female&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;23.1 (9)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Race/ethnicity of respondent&lt;sup&gt;b&lt;/sup&gt;&lt;/p&gt;&lt;/td&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt; Black/African American&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;70.2 (40)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt; Caucasian&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;22.8 (13)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt; Hispanic or Latino&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;5.3 (3)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt; Asian&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;3.5 (2)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt; Native American&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;3.5 (2)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt; Pacific Islander&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;1.8 (1)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt; Other&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;1.8 (1)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;/tbody&gt;&lt;/table&gt; </ephtml> </p> <p> <sups>a</sups>Some respondents reported multiple roles (e.g., parent and teacher) <sups>b</sups>Some respondents reported multiple racial/ethnic backgrounds</p> <hd id="AN0141099264-10">Setting</hd> <p>Two separate Meeting FACES workshops were held at university-affiliated locations with free and accessible parking in participants' communities (central North Carolina). Thirty-eight parents and professionals attended the first workshop; of those, 36 participants completed the survey (94.7% response rate). Additionally, 21 parents and professionals attended the second workshop; of those, all twenty-one participants completed the survey (100% response rate). Both Meeting FACES workshops were facilitated by the first author and included: (a) a meet &amp; greet and resource fair, (b) presentations from service providers, community agencies, and parent advocates (10–15 min each), (c) a question and answer session, and (d) wrap-up and survey. Each workshop had the same agenda, lasted approximately 3 h, and included food and childcare for the participants.</p> <hd id="AN0141099264-11">Data Collection and Measures</hd> <p>Given the exploratory nature of this study, the survey was adapted from an existing service access survey from The Autism Program of Illinois. The survey was developed using Qualtrics and participants submitted the surveys electronically immediately following each Meeting FACES session. The survey took participants 10–15 min to complete. To promote participation in the survey, the researchers explained that: (a) the survey was designed to collect information about participants' needs related to service access and (b) all participants would receive a $10 gift card following survey completion.</p> <hd id="AN0141099264-12">Survey</hd> <p>The survey included five primary domains: (a) participant demographics, (b) knowledge of available autism/disability services, (c) usefulness of available autism/disability services (i.e., satisfaction), (d) perceived importance of additional services/supports, and (e) satisfaction with the Meeting FACES workshop. Participant knowledge of available services, use of available services, and satisfaction with available services was specific to 18 community-based providers and services that support children with autism and related disabilities, and their families. The authors selected these services to reflect the providers who presented at the workshops and to reflect the available autism services in central NC. The survey included home and community-based services, managed care organizations, autism-specific schools and non-profit organizations, speech services, and psychological services. All participants completed the same survey; however, professionals could respond "N/A" to questions that were not applicable to them, such as "what is the gender of your child?"</p> <p>Participants completed Likert-scale items which ranked: (a) their knowledge and use of services in the community (e.g., 1 = <emph>did not know about the service,</emph> 2 = <emph>knew about the service, but did not use the service,</emph> 3 = <emph>used the service</emph>), (b) the helpfulness of services (e.g., 1 = <emph>very unhelpful,</emph> 2 = <emph>helpful,</emph> 3 = <emph>very helpful</emph>) in the community if used, and (c) the importance of adding potential services in their community (e.g., 1 = <emph>very unimportant,</emph> 2 = <emph>somewhat unimportant,</emph> 3 = <emph>neutral,</emph> 4 = <emph>somewhat important,</emph> 5 = <emph>very important</emph>). Participants completed additional survey items (open and close-ended) to indicate their satisfaction with the Meeting FACES workshop.</p> <hd id="AN0141099264-13">Data Analysis</hd> <p>Descriptive statistics were employed to measure (a) the participants' knowledge of, use of, and satisfaction with autism/disability services in central North Carolina, and (b) importance of potential services. Means were calculated to reflect average use of all services and helpfulness of all services (reported as satisfaction). Frequency measures of ratings were calculated for the participants' knowledge of, use of, and satisfaction with autism services in the community. Frequency measures were also calculated for the importance of potential services in the community. Finally, to explore the participants' satisfaction with the Meeting FACES workshop, the open-ended responses were analyzed by the first author using an open coding approach which included a search for recurring categories and emergent themes.</p> <hd id="AN0141099264-14">Results</hd> <p>Findings from the Meeting FACES survey reflected participants' (a) knowledge and use of available services, (b) satisfaction with available services, (c) importance of potential services, and (d) satisfaction with the Meeting FACES workshop.</p> <hd id="AN0141099264-15">Knowledge and Use of Services</hd> <p></p> <hd id="AN0141099264-16">Did not Know About the Service: Parents</hd> <p>When asked about their knowledge of autism-related services in central NC, on average, 50% (<emph>n</emph> = 18) of the Meeting FACES parents <emph>did not know</emph> about the available services/providers that were represented in the survey. The most common services that parents <emph>did not know about</emph> included home and community-based services (i.e., A Small Miracle), special autism schools (i.e., Embrace), and autism-specific psychiatric services (i.e., Gupta Psychiatry).</p> <hd id="AN0141099264-17">Did not Know About the Service: Professionals</hd> <p>When asked about their knowledge of autism-related services in central NC, on average, 26% (<emph>n</emph> = 5) of the professionals <emph>did not know</emph> about the services/providers that were represented in the survey. The most common services that professional participants <emph>did not know about</emph> included psychiatric services (i.e., Gupta Psychiatry), community-based services (i.e., Alpha Management Services), and vocational training (i.e., Going Full Circle). Of these, both parents and professionals were least familiar with Gupta Psychiatry.</p> <hd id="AN0141099264-18">Knew About the Service: Parents</hd> <p>As expected, the Autism Society of North Carolina (ASNC) was the most well-known service, as reported by parents' (86.5%; <emph>n</emph> = 32). The second most well-known service among parents following ASNC was the TEACCH Autism Program (78.3%; <emph>n</emph> = 29)</p> <hd id="AN0141099264-19">Knew About the Service: Professionals</hd> <p>The Autism Society of North Carolina (ASNC) was also the most well-known service, as reported by professionals' use (85%; <emph>n</emph> = 17). Mirroring parent findings, the second most well-known service among professionals following ASNC was the TEACCH Autism Program (85%; <emph>n</emph> = 17). Finally, each of the 18 services included in the survey were unknown to at least one parent and one professional participant in this study. See Table 2 for a full list of services and participant responses.</p> <p>Knowledge and use of services</p> <p> <ephtml> &lt;table frame="hsides" rules="groups"&gt;&lt;thead&gt;&lt;tr&gt;&lt;th align="left"&gt;&lt;p&gt;Service&lt;/p&gt;&lt;/th&gt;&lt;th align="left" colspan="2"&gt;&lt;p&gt;Did not know about the service&lt;/p&gt;&lt;/th&gt;&lt;th align="left" colspan="2"&gt;&lt;p&gt;Did not use the service&lt;/p&gt;&lt;/th&gt;&lt;th align="left" colspan="2"&gt;&lt;p&gt;Used the service&lt;/p&gt;&lt;/th&gt;&lt;/tr&gt;&lt;tr&gt;&lt;th align="left" /&gt;&lt;th align="left"&gt;&lt;p&gt;Parents (%)&lt;/p&gt;&lt;/th&gt;&lt;th align="left"&gt;&lt;p&gt;Professionals (%)&lt;/p&gt;&lt;/th&gt;&lt;th align="left"&gt;&lt;p&gt;Parents (%)&lt;/p&gt;&lt;/th&gt;&lt;th align="left"&gt;&lt;p&gt;Professionals (%)&lt;/p&gt;&lt;/th&gt;&lt;th align="left"&gt;&lt;p&gt;Parents (%)&lt;/p&gt;&lt;/th&gt;&lt;th align="left"&gt;&lt;p&gt;Professionals (%)&lt;/p&gt;&lt;/th&gt;&lt;/tr&gt;&lt;/thead&gt;&lt;tbody&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;A Small Miracle&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;67.6 (25)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;20.0 (4)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;24.3 (9)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;55.0 (11)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;5.4 (2)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;25.0 (5)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Access Family Services&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;59.5 (22)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;30.0 (6)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;24.3 (9)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;50.0 (10)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;10.8 (4)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;15.0 (3)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Alliance Behavioral Healthcare&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;24.3 (9)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;10.0 (2)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;27.0 (10)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;20.0 (4)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;45.9 (17)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;70.0 (14)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Alpha Management Services&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;56.8 (21)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;45.0 (9)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;27.0 (10)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;35.0 (7)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;10.8 (4)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;15.0 (3)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Autism Society of North Carolina&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;10.8 (4)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;5.0 (1)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;29.7 (11)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;35.0 (7)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;56.8 (21)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;50.0 (10)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Embrace&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;67.6 (25)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;35.0 (7)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;18.9 (7)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;40.0 (8)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;5.4 (2)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;20.0 (4)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;ECAC&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;54.1 (20)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;20.0 (4)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;24.3 (9)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;50.0 (10)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;16.2 (6)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;15.0 (3)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Going Full Circle&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;56.8 (21)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;40.0 (8)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;27.0 (10)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;35.0 (7)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;10.8 (4)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;20.0 (4)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Gupta&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;67.6 (25)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;55.0 (11)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;21.6 (8)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;35.0 (7)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;2.7 (1)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Mariposa School&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;51.4 (19)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;25.0 (5)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;37.8 (14)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;40.0 (8)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;8.1 (3)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;30.0 (6)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;NCCU Speech Services&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;59.5 (22)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;35.0 (7)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;24.3 (9)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;55.0 (11)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;8.1 (3)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;NCSU Psychoeducational Clinic&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;62.2 (23)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;45.0 (9)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;27.0 (10)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;45.0 (9)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;5.4 (2)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;5.0 (1)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;ABA Therapy&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;35.1 (13)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;10.0 (2)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;40.5 (15)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;50.0 (10)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;16.2 (6)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;40.0 (8)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Rescare&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;56.8 (21)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;25.0 (5)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;35.1 (13)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;40.0 (8)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;5.4 (2)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;30.0 (6)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Residential Services, Inc&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;51.4 (19)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;20.0 (4)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;37.8 (14)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;55.0 (11)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;2.7 (1)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;25.0 (5)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;TEACCH&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;21.6 (8)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;10.0 (2)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;37.8 (14)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;40.0 (8)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;40.5 (15)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;45.0 (9)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;ARC of NC&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;40.5 (15)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;10.0 (2)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;37.8 (14)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;50.0 (10)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;13.5 (5)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;40.0 (8)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;UNC Speech Clinic&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;48.6 (18)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;30.0 (6)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;40.5 (15)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;45.0 (9)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;8.1 (3)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;20.0 (4)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Average&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;49.6 (18.3)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;26.1 (5.2)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;30.2 (11.2)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;43.1 (8.61)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;15.2 (5.6)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;26.9 (5.8)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;/tbody&gt;&lt;/table&gt; </ephtml> </p> <hd id="AN0141099264-20">Did not Use the Service: Parents</hd> <p>When asked to indicate the extent to which they knew about the available services, but <emph>did not use</emph> them, on average, 30% (<emph>n</emph> = 11) of the Meeting FACES parent participants indicated that they <emph>did not use</emph> the services. The most common services that parent participants <emph>did not use</emph> were applied behavior analysis (ABA) therapy (40.5%; <emph>n</emph> = 15) and local university speech services (i.e., the UNC Speech Clinic; 40.5%; <emph>n</emph> = 15). In addition, although they knew about these services, more than one-third of the parent participants <emph>did not use:</emph> the Mariposa School (special autism school; <emph>n</emph> = 14), ResCare (respite care; <emph>n</emph> = 14), Residential Services (living options for individuals with developmental and intellectual disabilities; <emph>n</emph> = 14), TEACCH (core autism service; <emph>n</emph> = 14), or the ARC of NC (advocacy and access; 14).</p> <hd id="AN0141099264-21">Did not Use the Service: Professionals</hd> <p>When asked to indicate the extent to which they knew about the available services, but <emph>did not use</emph> them, on average, 43% (<emph>n</emph> = 8) of the Meeting FACES professional participants indicated that they <emph>did not use</emph> the services. The most common services that professional participants <emph>did not use</emph> were: A Small Miracle (home and community support; 55%; <emph>n</emph> = 11), university speech services (i.e., the NCCU Speech Clinic; 55%; <emph>n</emph> = 11), and Residential Services Inc. (residential facility; 55%; <emph>n</emph> = 11). In addition, although they knew about these services, half of the professional participants <emph>did not use:</emph> Access Family Services (home and community support; <emph>n</emph> = 10), Exceptional Children's Assistance Center (ECAC; North Carolina's parent training and information center; <emph>n</emph> = 10), ABA therapy (<emph>n</emph> = 10), or the ARC of NC (advocacy and access; 10).</p> <hd id="AN0141099264-22">Used the Service: Parents</hd> <p>When asked to indicate the extent to which they <emph>used</emph> the listed services, on average, 15% of the parent participants indicated that they <emph>used the services</emph> included in the survey. Moreover, findings indicated that at least one parent participant used each of the services included in the survey. Among parent participants, the most commonly used services included: the Autism Society of North Carolina (ASNC; the largest, comprehensive autism program in NC; 56.8%; <emph>n</emph> = 21), Alliance Behavioral Healthcare (managed care organization; 45.9%; <emph>n</emph> = 17), and TEACCH Autism program (a clinical services center for children with autism; 40.5%; <emph>n</emph> = 15).</p> <hd id="AN0141099264-23">Used the Service: Professionals</hd> <p>When asked to indicate the extent to which they <emph>used</emph> the listed services, on average, 27% of the professional participants indicated that they <emph>used the services</emph> included in the survey. Furthermore, findings indicated that professionals used 16/18 services. Similar to parent participants, the most commonly used services among professionals included: Alliance Behavioral Healthcare (managed care organization; 70%; <emph>n</emph> = 14), the Autism Society of North Carolina (ASNC; the largest, comprehensive autism program in NC; 50%; <emph>n</emph> = 10), and TEACCH Autism program (a clinical services center for children with autism; 45%; <emph>n</emph> = 9; See Table 2).</p> <hd id="AN0141099264-24">Satisfaction with Available Services</hd> <p>Meeting FACES participants were also asked to indicate how helpful the services were <emph>if they used them</emph>. Therefore, the responses for satisfaction with services reflect smaller subsamples based on participant use (e.g., 17 parents and 14 professionals used Alliance Behavioral Healthcare). There was variation in the extent to which the services were perceived as helpful. Of the 18 services listed in the survey, four services were rated as <emph>not helpful</emph> by at least one parent participant (i.e., ABA therapy, Alliance Behavioral Healthcare, ASNC, and TEACCH), and two services were rated as <emph>not helpful</emph> by at least one professional participant (i.e., Alpha Management Services and ResCare). One service (TEACCH) was rated as <emph>not helpful</emph> by both parents (20%; <emph>n </emph>= 3<emph>)</emph> and professionals (22%; <emph>n </emph>= 2). That is, of the participants who had used TEACCH, 21% (<emph>n </emph>= 5) of them rated the service as <emph>not helpful.</emph></p> <p>Participants also rated the extent to which they felt the services were <emph>somewhat helpful.</emph> Findings indicated that with the exception of Gupta Psychiatry, 17/18 services were rated as <emph>somewhat helpful</emph> by at least one parent or professional. ASNC was most highly ranked as <emph>somewhat helpful</emph> by parents (38.1%; <emph>n</emph> = 8), while Alliance Behavioral healthcare was most highly ranked as <emph>somewhat helpful</emph> by professionals (57.1%; <emph>n</emph> = 8).</p> <p>Additional findings indicated that all 18 services were rated as <emph>very helpful</emph> by at least one parent participant, while 15/18 services were rated as <emph>very helpful</emph> by at least one professional participant. The services that were most highly rated as <emph>very helpful</emph> by parents who used them included: ASNC (47.6%; <emph>n</emph> = 10), Alliance Behavioral Healthcare (47.1% <emph>n</emph> = 8), and TEACCH (46.7% <emph>n</emph> = 7). Similarly, the services that were most highly rated as <emph>very helpful</emph> by professionals who used them included: Alliance Behavioral Healthcare (42.9%; <emph>n</emph> = 6), ASNC (50%; <emph>n</emph> = 5), and TEACCH (44.4%; <emph>n</emph> = 4). Across both parents and professionals who used them, 42% (<emph>n</emph> = 14) of the participants rated Alliance as <emph>very helpful,</emph> 48.4% (<emph>n</emph> = 15) rated ASNC as <emph>very helpful</emph> and 45.5% (<emph>n</emph> = 11) rated TEACCH as <emph>very helpful.</emph></p> <p>Finally, although they were not the most highly ranked based on raw numbers, there were six services that were rated as <emph>very helpful</emph> by 100% of the parent participants who utilized them, and one service that was rated as very helpful by 100% of the professional participants who utilized it. For example, three parents reported that they used the North Carolina Central University (NCCU) Speech Clinic, and all three participants rated the clinic as <emph>very helpful.</emph> Among professionals, three participants reported that they used the Exceptional Children's Assistance Center (ECAC) and all three professionals rated ECAC as <emph>very helpful.</emph> See Table 3 for more information about the satisfaction with services.</p> <p>Satisfaction with services</p> <p> <ephtml> &lt;table frame="hsides" rules="groups"&gt;&lt;thead&gt;&lt;tr&gt;&lt;th align="left"&gt;&lt;p&gt;Service&lt;/p&gt;&lt;/th&gt;&lt;th align="left" colspan="2"&gt;&lt;p&gt;Not helpful&lt;/p&gt;&lt;/th&gt;&lt;th align="left" colspan="2"&gt;&lt;p&gt;Somewhat helpful&lt;/p&gt;&lt;/th&gt;&lt;th align="left" colspan="2"&gt;&lt;p&gt;Very helpful&lt;/p&gt;&lt;/th&gt;&lt;/tr&gt;&lt;tr&gt;&lt;th align="left" /&gt;&lt;th align="left" colspan="2"&gt;&lt;p&gt;Parents professionals (%)&lt;/p&gt;&lt;/th&gt;&lt;th align="left" colspan="2"&gt;&lt;p&gt;Parents professionals (%)&lt;/p&gt;&lt;/th&gt;&lt;th align="left" colspan="2"&gt;&lt;p&gt;Parents professionals (%)&lt;/p&gt;&lt;/th&gt;&lt;/tr&gt;&lt;/thead&gt;&lt;tbody&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;A Small Miracle (2; 5)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;60 (3)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;100 (2)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;40 (2)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Access Family Services (4; 3)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;25 (1)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;33.3 (1)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;75 (3)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;66.7 (2)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Alliance Behavioral Healthcare (17; 14)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;17.6 (3)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;35.3 (6)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;57.1 (8)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;47.1 (8)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;42.9 (6)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Alpha Management Services (4; 3)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;33.3 (1)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;50 (2)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;33.3 (1)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;50 (2)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;33.3 (1)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Autism Society of North Carolina (21; 10)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;14.3 (3)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;38.1 (8)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;50 (5)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;47.6 (10)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;50 (5)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Embrace (2; 4)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;50 (1)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;25 (1)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;50 (1)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;75 (3)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;ECAC (6; 3)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;50 (3)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;50 (3)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;100 (3)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Full Circle (4; 4)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;25 (1)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;25 (1)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;75 (3)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;75 (3)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Gupta (1; 0)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;100 (1)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Mariposa School (3; 6)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;66.7 (4)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;100 (3)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;33.3 (2)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;NCCU Speech Services (3; 0)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;100 (3)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;NCSU Psychoeducational Clinic (2; 1)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;100 (1)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;100 (2)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;ABA Therapy (6; 8)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;16.7 (1)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;33.3 (2)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;62.5 (5)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;50 (3)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;37.5 (3)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Rescare (2; 6)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;16.7 (1)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;50 (1)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;33.3 (2)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;50 (1)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;50 (3)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Residential Services, (1; 5)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;60 (3)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;100 (1)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;40 (2)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;TEACCH (15; 9)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;20 (3)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;22.2 (2)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;33.3 (5)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;33.3 (3)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;46.7 (7)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;44.4 (4)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;ARC of NC (5; 8)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;20 (1)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;62.5 (5)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;80 (4)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;37.5 (3)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;UNC Speech Clinic (3; 4)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;50 (2)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;100 (3)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;50 (2)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;/tbody&gt;&lt;/table&gt; </ephtml> </p> <hd id="AN0141099264-25">Importance of Potential Services</hd> <p>After indicating their knowledge of, use of, and satisfaction with existing autism and related services in central North Carolina, participants were asked to rate the importance of <emph>potential</emph> services if they were to be available, by responding to the following: <emph>Below is a list of potential services that may currently be limited, non</emph>-<emph>existent, or not customized for children and young adults with autism and their families. We would like to know how important these potential services might be for you, your family, or the families you serve (educators/providers).</emph></p> <p>Fifteen potential services were included in this section. Example potential services included: an information and referral service that parents could call, a library of information about autism, support groups for siblings, education or training for parents, and education or training for healthcare providers. Across both parents and professionals, findings indicated that a telephone referral service, training for professionals, and social skills training for individuals with autism were all <emph>very important</emph> potential services.</p> <hd id="AN0141099264-26">Importance of Potential Services: Parents</hd> <p>On average, 68% (<emph>n</emph> = 25) of the parent participants thought that these potential services were <emph>very important</emph>. The most highly regarded potential services among parent participants included: a telephone referral service (94.6%; <emph>n</emph> = 35), social skills training for individuals with autism (94.6%; <emph>n</emph> = 35), education or training for parents (91.9%; <emph>n</emph> = 34), and training for professionals (91.9%; <emph>n</emph> = 34). While most of the potential services were rated as <emph>very important</emph> by the majority of both parents and professionals, eight of the potential services were rated as <emph>somewhat unimportant</emph> by 5% of parents, on average. The only potential service that was rated as <emph>very unimportant</emph> among parent participants was marital therapy (5.4%; <emph>n</emph> = 2).</p> <hd id="AN0141099264-27">Importance of Potential Services: Professionals</hd> <p>On average, 65% of the professional participants thought that the potential services were <emph>very important.</emph> The most highly regarded potential service among professional participants included: summer programs or camps (95%; <emph>n</emph> = 19) and training for healthcare providers (85%; <emph>n</emph> = 17). In addition, 85% (<emph>n</emph> = 17) of the professional participants rated the following services as <emph>very important:</emph> a telephone referral service, social skills training for individuals with autism, in-home consultation for parents, and training for professionals. While most of the potential services were rated as <emph>very important</emph> by professionals, case management was rated as <emph>somewhat unimportant</emph> by one professional (2%). There were no potential services that were rated as <emph>very unimportant</emph> among professional participants in this study. See Table 4 for participant ratings of importance of potential services.</p> <p>Importance of potential services</p> <p> <ephtml> &lt;table frame="hsides" rules="groups"&gt;&lt;thead&gt;&lt;tr&gt;&lt;th align="left"&gt;&lt;p&gt;Service&lt;/p&gt;&lt;/th&gt;&lt;th align="left" colspan="2"&gt;&lt;p&gt;Very unimportant&lt;/p&gt;&lt;/th&gt;&lt;th align="left" colspan="2"&gt;&lt;p&gt;Somewhat unimportant&lt;/p&gt;&lt;/th&gt;&lt;th align="left" colspan="2"&gt;&lt;p&gt;Neutral&lt;/p&gt;&lt;/th&gt;&lt;th align="left" colspan="2"&gt;&lt;p&gt;Somewhat important&lt;/p&gt;&lt;/th&gt;&lt;th align="left" colspan="2"&gt;&lt;p&gt;Very important&lt;/p&gt;&lt;/th&gt;&lt;/tr&gt;&lt;tr&gt;&lt;th align="left" /&gt;&lt;th align="left"&gt;&lt;p&gt;Parents (%)&lt;/p&gt;&lt;/th&gt;&lt;th align="left"&gt;&lt;p&gt;Professionals (%)&lt;/p&gt;&lt;/th&gt;&lt;th align="left"&gt;&lt;p&gt;Parents (%)&lt;/p&gt;&lt;/th&gt;&lt;th align="left"&gt;&lt;p&gt;Professionals (%)&lt;/p&gt;&lt;/th&gt;&lt;th align="left"&gt;&lt;p&gt;Parents (%)&lt;/p&gt;&lt;/th&gt;&lt;th align="left"&gt;&lt;p&gt;Professionals (%)&lt;/p&gt;&lt;/th&gt;&lt;th align="left"&gt;&lt;p&gt;Parents (%)&lt;/p&gt;&lt;/th&gt;&lt;th align="left"&gt;&lt;p&gt;Professionals (%)&lt;/p&gt;&lt;/th&gt;&lt;th align="left"&gt;&lt;p&gt;Parents (%)&lt;/p&gt;&lt;/th&gt;&lt;th align="left"&gt;&lt;p&gt;Professionals (%)&lt;/p&gt;&lt;/th&gt;&lt;/tr&gt;&lt;/thead&gt;&lt;tbody&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Telephone Referral Service (57)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;5.0 (1)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;5.4 (2)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" 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(14)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Library of Information about Autism (51)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;2.7 (1)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;2.7 (1)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;10.0 (2)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;16.2 (6)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;30.0 (6)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;78.4 (29)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;60.0 (12)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Case Management or Coordination of Services (51)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;&amp;#8211;&lt;/p&gt;&lt;/td&gt;&lt;td 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(1)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;10.0 (2)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;91.9 (34)&lt;/p&gt;&lt;/td&gt;&lt;td char="(" align="char"&gt;&lt;p&gt;85.0 (17)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;/tbody&gt;&lt;/table&gt; </ephtml> </p> <hd id="AN0141099264-28">Satisfaction with Meeting FACES</hd> <p>All Meeting FACES participants who completed the survey (parents and professionals) rated their likelihood of recommending the workshop to a friend/patient/colleague. Of the parent participants (<emph>n</emph> = 37), 86.5% indicated that they were <emph>very likely</emph> to recommend the Meeting FACES workshop to a family member or friend, and 13.5% indicated that they were <emph>somewhat likely</emph> to recommend Meeting FACES to family member or friend. Among professionals, 100% (<emph>n</emph> = 27) were <emph>very likely</emph> to recommend the Meeting FACES workshop to a patient or colleague.</p> <p>Participants were also asked to provide open-ended responses indicating what they enjoyed most about the Meeting FACES workshop; participants shared quotes which have been constructed into the following data poem:</p> <p> <emph>The speakers.</emph> </p> <p> <emph>Hearing from parents.</emph> </p> <p> <emph>The wealth of knowledge.</emph> </p> <p> <emph>Sharing experiences and resources.</emph> </p> <p> <emph>To connect, laugh, cry, and understand.</emph> </p> <p> <emph>Community feeling.</emph> </p> <hd id="AN0141099264-29">Discussion</hd> <p>Few studies to date have explored the needs of minority families of children with autism. In fact, to our knowledge, this is the first known study that has evaluated minority families' knowledge of, use of, and satisfaction with autism and related services in their communities. Moreover, this is the first known study to assess minority families' satisfaction with a community-based workshop, designed to connect families to services. As such, this study highlights service access and utilization among minority families of children with autism living in central North Carolina.</p> <hd id="AN0141099264-30">Linking Families and Services</hd> <p>Meeting FACES links family and services by directly connecting families with service providers to gain information about those services. This setting created an opportunity for parent participants to: (a) ask questions of professional participants in a group setting and (b) request more details and clarification from service providers, following the workshop. The partnership between families and professionals is critical due to the inherent nature in which families gain access to services and how families learn about available services and determine which ones best fit their family needs.</p> <hd id="AN0141099264-31">Overcoming Barriers</hd> <p>For families of children with autism, logistical barriers to services transcend race/ethnicity, SES, and geography (Dymond et al. [<reflink idref="bib7" id="ref27">7</reflink>]; Pickard and Ingersoll [<reflink idref="bib20" id="ref28">20</reflink>]). Among minority families, however, these barriers are heightened (LaClair et al. [<reflink idref="bib10" id="ref29">10</reflink>]). Findings suggest that implementing interventions in the home or community can contribute to increased trust and less of a power differential that often arises in therapy and research studies, particularly among underrepresented families (e.g., Snell-Johns et al. [<reflink idref="bib22" id="ref30">22</reflink>]). Historically, African American families have been known to benefit from service delivery in community contexts because it builds on their culturally-rich traditions of self-help, informal social support, and mutual support (Stone et al. [<reflink idref="bib24" id="ref31">24</reflink>]). Snell-Johns et al. ([<reflink idref="bib22" id="ref32">22</reflink>]) have corroborated these findings—they assert that delivering supports in multi-family groups can decrease stigma among minority families, which has been identified as a barrier to accessing services. More recently, Pellecchia et al. ([<reflink idref="bib19" id="ref33">19</reflink>]) suggested that the delivery of intervention in community settings is more accessible and a critical element for improving parent engagement and reducing attrition for underrepresented families. The current study addresses the need for community-based supports for families of children with autism who come from underrepresented backgrounds and also uncovers three primary findings which highlight implications for both research and practice related to access to autism services for minority families in central NC.</p> <p>First, in terms of knowledge and use of services, we found that 50% of the Meeting FACES parent participants <emph>did not know</emph> about available autism services in their communities. Moreover, 30% of the parent participants were aware of specific services that were available to them, but did not use them. Most notably, on average, only 15% of the parent participants indicated that they had used any of the services included in the survey. These findings suggest that minority families of children with autism in central NC face major barriers related to (a) knowledge of services, (b) access to services, and (c) satisfaction with services.</p> <p>Second, in terms of satisfaction with services, while all 18 services were rated <emph>very helpful</emph> by at least one parent participant, there was great variation in participants' satisfaction with the services (i.e., helpfulness). For example, four out of the 18 services included in the survey were rated as <emph>not helpful</emph> by parents and three services were rated as <emph>not helpful</emph> by professionals. These findings suggest that there may be specific factors that influence the extent to which parents and professionals find services efficacious for their children or the children and families they support. Given the very small sample size of this exploratory study, these findings are not yet generalizable, but they point to the need for future work to explore how some of the largest autism service providers in NC are reaching communities of color. The variation in satisfaction demonstrates a need to (a) identify and strengthen strategies that facilitate satisfaction and (b) identify best practices to overcome barriers for families who are dissatisfied with autism services.</p> <p>Third, we found that the development of potential services was extremely important for participants in this study. That is, more than 80% of all participants rated the potential services (e.g., education or training for parents) as <emph>very important.</emph> These findings demonstrate a specific need not only for the development of services to support minority families' needs, but also to support professionals in providing comprehensive and collaborative care to children with autism in NC.</p> <hd id="AN0141099264-32">Limitations</hd> <p>Although this study is a first step in developing a better understanding of service access and service utilization among ethnic minority families in central NC, there are a few limitations. First, this survey study has a small sample size, a specific geographic context, and a specific list of services that were tailored to the community. Future research in this domain should include larger samples, explore the differences in geographic contexts (e.g., urban and rural) across the state, and include specific items to measure participants' knowledge of and satisfaction with behavior management services. Moreover, the current study did not explore factors that contribute to <emph>why</emph> the participants are not utilizing services that are available in their communities (e.g., logistical barriers, costs, racial disparities). Future research could better explore why parents and professionals in central NC are not using specific services, and furthermore, why participants believed some of the services were not helpful. Given these limitations, the aforementioned results should be interpreted with caution.</p> <hd id="AN0141099264-33">Implications</hd> <p></p> <hd id="AN0141099264-34">Research</hd> <p>Previous work related to racial and ethnic disparities in autism research suggests that there are broad socioeconomic, cultural, and language barriers that limit minority families' participation in research and navigation of treatment options (e.g., Hilton et al. [<reflink idref="bib8" id="ref34">8</reflink>]). The Meeting FACES workshop, however, is one example of a community-based outreach program that (a) successfully recruited minority families and (b) connected them to autism services in their communities. The preliminary findings from this exploratory study suggest that there are four specific areas of research that require more focus: (a) qualitative exploration of factors that influence parent satisfaction with services, (b) developing and measuring the efficacy of community-based programming (such as Meeting FACES) for minority families, (c) assessing the needs of families living in rural and impoverished communities, and (d) measuring child-level outcomes of community-based parent trainings and partnership workshops among both White and minority families. Finally, autism researchers should: (a) make a concerted effort to effectively recruit and retain representative samples of minority participants and (b) conduct research in community-based settings when feasible. Far too often minority families are underrepresented in autism research, and their voices--the complexities of their experiences, are left unheard.</p> <hd id="AN0141099264-35">Practice</hd> <p>In terms of practice, there is a need for ongoing, community-based outreach designed to address the needs of minority populations. Specifically, future programming should bring parents and community-based professionals together to: (a) build parents' knowledge and awareness of autism services in their communities, (b) increase parents' capacity to access such services, and (c) build providers' knowledge and awareness of the needs and concerns of the minority families of children with autism that they serve. Consistent with previous findings from the CDC ([<reflink idref="bib4" id="ref35">4</reflink>]), there is a need for schools and healthcare providers to collaborate to increase underrepresented families' awareness of and access to services. Schools should partner with community stakeholders and host events that connect parents of children with autism to resources in their communities. Additionally, service providers should make efforts to better support underserved communities by posting informational flyers in environments that are most often frequented by families, such as schools, places of worship, public transit announcement boards, pediatrician or medical care offices, and daycares.</p> <p>Finally, Mandell and Novak ([<reflink idref="bib12" id="ref36">12</reflink>]) purported that parent-professional partnerships are often lacking in minority communities due to cultural mismatch and interactions within the healthcare system. Those findings have since been corroborated by Pearson and Meadan ([<reflink idref="bib17" id="ref37">17</reflink>]) and Pearson et al. (in press). The Meeting FACES workshop is one effort to dismantle the barriers that minority families of children with autism so often face when entering systems of care. That is, Meeting FACES builds promise for the potential of strengthened parent-professional partnerships when professionals: (a) connect with parents in neutral, community-based settings, and (b) engage in conversations about how to address the critical needs of minority families of children with autism.</p> <hd id="AN0141099264-36">Conclusion</hd> <p>Although previous work has demonstrated underrepresentation of minority families in autism research, preliminary findings from this study suggest that: (a) minority families in central NC actively participate in autism research when the research is specifically tailored to their community, (b) minority families in central NC are largely unaware of the autism services that exist in their communities, (c) when minority families are aware of and use these services they often find them <emph>very helpful</emph> or <emph>somewhat helpful</emph>. Therefore, this work points to the importance of continued community-based research that engages communities of color (who are historically underrepresented in autism research), and, albeit exploratory, this study begins to shed light on one of the primary barriers that minority families of children with autism face in NC—knowledge of available services.</p> <p>Future work should not only aim to build knowledge of services among minority families of children with autism, but should also delve into specific reasons why minority families of children with autism choose not to use specific services or are not satisfied with services. These findings could help community agencies address barriers to care for minority children with autism, and help dismantle the disparities in access to services that exist for so many minority families of children with autism.</p> <hd id="AN0141099264-37">Funding</hd> <p>This study was supported by North Carolina State University (<ulink href="http://dx.doi.org/10.13039/100007703">http://dx.doi.org/10.13039/100007703</ulink>).</p> <hd id="AN0141099264-38">Author Contributions</hd> <p>JNP designed the study, conducted data collection, data analysis, and wrote the manuscript. ALT conducted data collection, data analysis, and wrote the manuscript. LMD, KM, and EC conducted data collection and contributed to manuscript preparation.</p> <hd id="AN0141099264-39">Compliance with Ethical Standards</hd> <p></p> <hd id="AN0141099264-40">Disclosure of potential conflict of interest</hd> <p>All authors declared that they have no conflict of interest.</p> <hd id="AN0141099264-41">Informed Consent</hd> <p>Informed consent was obtained from all individual participants included in the study.</p> <hd id="AN0141099264-42">Research Involving Human Participants</hd> <p>All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.</p> <hd id="AN0141099264-43">Publisher's Note</hd> <p>Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.</p> <ref id="AN0141099264-44"> <title> References </title> <blist> <bibl id="bib1" idref="ref14" type="bt">1</bibl> <bibtext> Autism Society of NC. 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Denny; Kayla Malone and Evadine Codd</p> <p>Reported by Author; Author; Author; Author; Author</p> </aug> <nolink nlid="nl1" bibid="bib25" firstref="ref2"></nolink> <nolink nlid="nl2" bibid="bib26" firstref="ref7"></nolink> <nolink nlid="nl3" bibid="bib23" firstref="ref8"></nolink> <nolink nlid="nl4" bibid="bib20" firstref="ref11"></nolink> <nolink nlid="nl5" bibid="bib21" firstref="ref12"></nolink> <nolink nlid="nl6" bibid="bib10" firstref="ref15"></nolink> <nolink nlid="nl7" bibid="bib17" firstref="ref16"></nolink> <nolink nlid="nl8" bibid="bib11" firstref="ref19"></nolink> <nolink nlid="nl9" bibid="bib13" firstref="ref20"></nolink> <nolink nlid="nl10" bibid="bib15" firstref="ref22"></nolink> <nolink nlid="nl11" bibid="bib14" firstref="ref25"></nolink> <nolink nlid="nl12" bibid="bib16" firstref="ref26"></nolink> <nolink nlid="nl13" bibid="bib22" firstref="ref30"></nolink> <nolink nlid="nl14" bibid="bib24" firstref="ref31"></nolink> <nolink nlid="nl15" bibid="bib19" firstref="ref33"></nolink> <nolink nlid="nl16" bibid="bib12" firstref="ref36"></nolink> |
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| Items | – Name: Title Label: Title Group: Ti Data: Meeting FACES: Preliminary Findings from a Community Workshop for Minority Parents of Children with Autism in Central North Carolina – Name: Language Label: Language Group: Lang Data: English – Name: Author Label: Authors Group: Au Data: <searchLink fieldCode="AR" term="%22Pearson%2C+Jamie+N%2E%22">Pearson, Jamie N.</searchLink> (ORCID <externalLink term="http://orcid.org/0000-0001-6200-3790">0000-0001-6200-3790</externalLink>)<br /><searchLink fieldCode="AR" term="%22Traficante%2C+Amanda+L%2E%22">Traficante, Amanda L.</searchLink><br /><searchLink fieldCode="AR" term="%22Denny%2C+Lauren+M%2E%22">Denny, Lauren M.</searchLink><br /><searchLink fieldCode="AR" term="%22Malone%2C+Kayla%22">Malone, Kayla</searchLink><br /><searchLink fieldCode="AR" term="%22Codd%2C+Evadine%22">Codd, Evadine</searchLink> – Name: TitleSource Label: Source Group: Src Data: <searchLink fieldCode="SO" term="%22Journal+of+Autism+and+Developmental+Disorders%22"><i>Journal of Autism and Developmental Disorders</i></searchLink>. Jan 2020 50(1):1-11. – Name: Avail Label: Availability Group: Avail Data: Springer. Available from: Springer Nature. 233 Spring Street, New York, NY 10013. Tel: 800-777-4643; Tel: 212-460-1500; Fax: 212-348-4505; e-mail: customerservice@springernature.com; Web site: https://link.springer.com/ – Name: PeerReviewed Label: Peer Reviewed Group: SrcInfo Data: Y – Name: Pages Label: Page Count Group: Src Data: 11 – Name: DatePubCY Label: Publication Date Group: Date Data: 2020 – Name: TypeDocument Label: Document Type Group: TypDoc Data: Journal Articles<br />Reports - Evaluative – Name: Subject Label: Descriptors Group: Su Data: <searchLink fieldCode="DE" term="%22Parent+Workshops%22">Parent Workshops</searchLink><br /><searchLink fieldCode="DE" term="%22Autism%22">Autism</searchLink><br /><searchLink fieldCode="DE" term="%22Pervasive+Developmental+Disorders%22">Pervasive Developmental Disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Program+Descriptions%22">Program Descriptions</searchLink><br /><searchLink fieldCode="DE" term="%22Family+Needs%22">Family Needs</searchLink><br /><searchLink fieldCode="DE" term="%22Health+Services%22">Health Services</searchLink><br /><searchLink fieldCode="DE" term="%22Social+Services%22">Social Services</searchLink><br /><searchLink fieldCode="DE" term="%22Minority+Groups%22">Minority Groups</searchLink><br /><searchLink fieldCode="DE" term="%22Parent+Attitudes%22">Parent Attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Parent+Child+Relationship%22">Parent Child Relationship</searchLink> – Name: Subject Label: Geographic Terms Group: Su Data: <searchLink fieldCode="DE" term="%22North+Carolina%22">North Carolina</searchLink> – Name: DOI Label: DOI Group: ID Data: 10.1007/s10803-019-04295-4 – Name: ISSN Label: ISSN Group: ISSN Data: 0162-3257 – Name: Abstract Label: Abstract Group: Ab Data: In North Carolina (NC), there are many resources designed to support the needs of children with autism and their families, and yet a troubling gap in underserved families' access to those services. To address this gap, the Meeting FACES workshop was designed to: (a) provide an opportunity for parents, educators, and service providers to build partnerships, (b) provide parents with opportunities to learn about available autism services in their communities, and (c) assess the needs of underrepresented families of children with autism in NC. Findings indicate that minority families of children with autism in central NC require more supports to access and navigate services. Additionally, participants were very satisfied with Meeting FACES and were interested in participating in future FACES programming. – Name: AbstractInfo Label: Abstractor Group: Ab Data: As Provided – Name: DateEntry Label: Entry Date Group: Date Data: 2020 – Name: AN Label: Accession Number Group: ID Data: EJ1239217 |
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| RecordInfo | BibRecord: BibEntity: Identifiers: – Type: doi Value: 10.1007/s10803-019-04295-4 Languages: – Text: English PhysicalDescription: Pagination: PageCount: 11 StartPage: 1 Subjects: – SubjectFull: Parent Workshops Type: general – SubjectFull: Autism Type: general – SubjectFull: Pervasive Developmental Disorders Type: general – SubjectFull: Program Descriptions Type: general – SubjectFull: Family Needs Type: general – SubjectFull: Health Services Type: general – SubjectFull: Social Services Type: general – SubjectFull: Minority Groups Type: general – SubjectFull: Parent Attitudes Type: general – SubjectFull: Parent Child Relationship Type: general – SubjectFull: North Carolina Type: general Titles: – TitleFull: Meeting FACES: Preliminary Findings from a Community Workshop for Minority Parents of Children with Autism in Central North Carolina Type: main BibRelationships: HasContributorRelationships: – PersonEntity: Name: NameFull: Pearson, Jamie N. – PersonEntity: Name: NameFull: Traficante, Amanda L. – PersonEntity: Name: NameFull: Denny, Lauren M. – PersonEntity: Name: NameFull: Malone, Kayla – PersonEntity: Name: NameFull: Codd, Evadine IsPartOfRelationships: – BibEntity: Dates: – D: 01 M: 01 Type: published Y: 2020 Identifiers: – Type: issn-print Value: 0162-3257 Numbering: – Type: volume Value: 50 – Type: issue Value: 1 Titles: – TitleFull: Journal of Autism and Developmental Disorders Type: main |
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