Running head: SPEECH LANGUAGE IMPAIRMENTS IN UTAH SPEECH LANGUAGE IMPAIRMENTS IN UTAH by Laura Marie O’Donnell A project submitted in partial fulfillment of the requirements for the degree of MASTER OF EDUCATION IN CURRICULUM AND INSTRUCTION WEBER STATE UNIVERSITY Ogden, Utah April 26, 2021 Approved ________________________________ Natalie A. Williams, Ph.D. ________________________________ Camie Bearden, M.Ed. ________________________________ Jenny Morales, M.S., CCC-SLP SPEECH LANGUAGE IMPAIRMENTS IN UTAH 2 Acknowledgements This 19-year journey involves many, and so my list is long. My humble gratitude to the State of Washington, Franklin Pierce School District, and Pacific Lutheran University, to whom I am indebted the gift of a master’s program in Special Education that allowed me to begin teaching. My inability to complete the final obligation to stay and teach for four additional years is a heavy burden. Prayers for all families gripped in the horror of domestic violence; may they find their way to safety and peace. Thanks to Dr. Gary Hiam in Tacoma, my children and I did. I would not be here today without him. His continued dedication through the last leg of this program, as I faced particular challenges, has been crucial to my success. Special gratitude is extended to Dr. Louise Moulding for opening the door and “creating a way where there seemed to be no way” to finally obtain this certificate at Weber State University. To my mom, who yearned to complete more than her high school diploma. She secured my ability for higher education and a way out of poverty. Thanks mom, you broke the cycle and your spirit lives on! For whom I began this journey: my children, Stephen, Aaron, Sarah, Savannah, and Alex. You gave me courage I never knew I had! Thanks to Dr. Lisa Ann Mauthe, whose 40 years of friendship, constant acceptance and steadfast encouragement will continue to motivate me. To Dr. Josephine Sarah Jackson, your gentle kindness, bravery, grit, and love has been such an inspiring example. You helped lead me to discover that the losses I perpetuated by my choices have been undone by the blessings I was granted because of them. SPEECH LANGUAGE IMPAIRMENTS IN UTAH 3 Anna Cich, thank you for listening to the Holy Spirit and sending texts and prayers at just the right moments. You truly are His conduit. Tammi Bischoff, M.S., CCC-SLP, I admired your magical and inspiring abilities from afar for many years until God brought us together just as this research became serious. Your camaraderie and support has helped bring this all to fruition. Thanks to each member of my committee, whose specific expertise helped provide the knowledge to pull this project together cohesively: Dr. Natalie Williams, Camie Bearden, M.Ed., and Jenny Morales, M.S., CCC-SLP. Dr. Dan Hubler, I am grateful for your unwavering expressions of uplifting encouragement. You were always there, putting things aside to assist me with Qualtrics, instilling confidence, and rallying me on. You not only strengthened me, you gave this project bones. Deepest love and appreciation goes to my anchor in the storm, my Miguel. Without my request, and without any complaint, you quietly filled in the gaps of my absence through my countless hours of work. I could depend upon, and implicitly trust, your loving, supportive care and devotion. Aloha. This research is dedicated to the students I have been honored to cross paths with, and the families who devoted their time to this investigation. Their persistence through their communication difficulties inspired this study. My hope is a solution to the problems Utah families face, so that each child’s voice can be clearly understood. SPEECH LANGUAGE IMPAIRMENTS IN UTAH 4 Table of Contents NATURE OF THE PROBLEM ..................................................................................................... 9 Literature Review .............................................................................................................. 11 The impacts of speech language impairments ...................................................... 11 Academic .................................................................................................. 11 Social and Emotional ................................................................................ 12 Stress ......................................................................................................... 14 Familial Communication .......................................................................... 14 Significance and Benefits of Early Intervention ................................................... 15 Reduced Risks ........................................................................................... 15 Brain Development ................................................................................... 16 Quality of Life ........................................................................................... 17 Utah’s Early Intervention Crisis ........................................................................... 18 Speech Delay Prevalence .......................................................................... 18 Lack of Access .......................................................................................... 19 Familial Difficulties .................................................................................. 19 Potential Roadblocks ................................................................................ 20 Potential Solutions .................................................................................... 21 Innovative Funding ................................................................................... 21 Screening ................................................................................................... 22 Early Intervention Improvements ......................................................................... 23 Unknown Factors .................................................................................................. 24 PURPOSE .................................................................................................................................... 26 SPEECH LANGUAGE IMPAIRMENTS IN UTAH 5 METHOD ................................................................................................................................. 26 Research Design ................................................................................................................ 26 Participants ........................................................................................................................ 26 Instruments ........................................................................................................................ 27 Procedure .......................................................................................................................... 28 RESULTS .................................................................................................................................... 30 Qualtrics Survey Results ................................................................................................... 30 Survey Results From Parents With a Diagnosis ................................................... 31 Survey Results From Parents Without a Diagnosis .............................................. 35 Survey Short Answer Results ............................................................................... 37 Specifics That Helped Parents Access Services ................................................... 38 Specifics That Hindered Parent’s Access to Services ........................................... 38 Focus Group Results ......................................................................................................... 40 Who or What Helped You Access Services? ........................................................ 40 What Were the Biggest Challenges You Faced? .................................................. 41 What Would be of Most Benefit to Families? 42 What Additional Information Would You Like to Share? .................................... 43 DISCUSSION ............................................................................................................................... 44 Survey Interpretations ....................................................................................................... 44 Survey Implications .......................................................................................................... 45 Focus Group Interpretations ............................................................................................. 47 Focus Group Implications ................................................................................................. 50 Limitations ........................................................................................................................ 51 SPEECH LANGUAGE IMPAIRMENTS IN UTAH 6 Suggestions For Future Research ...................................................................................... 53 Conclusion ........................................................................................................................ 55 REFERENCES ............................................................................................................................. 57 APPENDICES .............................................................................................................................. 64 Appendix A: Weber State Institutional Review Board Letter of Approval ...................... 65 Appendix B: Qualtrics Survey .......................................................................................... 68 Appendix C: Survey Text Box Written Responses ........................................................... 86 Appendix D: Focus Group Transcriptions Categorized by Questions .............................. 93 SPEECH LANGUAGE IMPAIRMENTS IN UTAH 7 List of Figures Figure 1. Parent responses regarding what occurred if they had concerns .................................. 31 Figure 2. Overall percentages of who referred according to parent responses ............................ 32 Figure 3. Parent written responses to “other” in regard to who referred their child to services .. 33 Figure 4. Responses regarding what helped parents obtain services ............................................ 33 Figure 5. Parent responses to what inhibited access to services ................................................... 34 Figure 6. Parent written responses to “other” regarding what prevented access to services ........ 35 Figure 7. Frequency of parent responses when asked if they had expressed their concerns to their pediatrician ................................................................................................................... 36 Figure 8. Frequency of responses when parents were asked what occurred after pediatrician expressed a concern ...................................................................................................... 36 SPEECH LANGUAGE IMPAIRMENTS IN UTAH 8 Abstract An unusually high percentage of Kindergarten students begin school in Utah with a speech or language impairment. These impairments can affect the academic and social capabilities of these children. Prior research has demonstrated the long term effects language impairments can have upon the life of a child as well. Family stress associated with the difficulty of communication can be compounded when parents are unable to find solutions to help their child. Research and analysis of parent’s awareness of speech milestones and implications upon the life of their child was investigated. The analysis of parental experiences as they sought a referral and speech therapy services revealed a wide range of issues. State policy and programs were investigated to help provide an understanding of their role and impact upon this study group. Utah is in the process of making vital changes in an attempt to address this problem. Additional research will be necessary to ensure these changes will sufficiently meet the needs of families who have children with speech and language impairments. SPEECH LANGUAGE IMPAIRMENTS IN UTAH 9 NATURE OF THE PROBLEM The educational expectation for all students to interact and communicate with one another in partner sharing and collaboration creates troublesome challenges for Kindergarten students fearful of expressing themselves due to speech impairments (Hitchcock, Harel, & Byun, 2015). Communication impairments create insecurity, a fear of being teased, or misunderstood, and an unwillingness to interact with others (Hart, Fujiki, Brinton, & Hart, 2004). Additionally, the inability to produce correct letter sounds transfers to an inability to attach correct written symbols for those sounds (McLeod & Apel, 2015). The academic expectations required to obtain fluent reading levels are also hindered by communication disorders (Beard, 2018; Catts, Fey, Tomblin, & Zhang, 2002; McLeod & Apel, 2015; Tomblin, Zhang, Buckwalter, & Catts, 2000). Communication disorders impede cognitive brain development (Edwards, Fox, & Rogers, 2002; Nijland, 2009; Nijland, Terband, & Maassen, 2015; Peter, Button, Stoel-Gammon, Chapman, & Raskind, 2013), endanger proficient academic achievement (McLeod & Apel, 2015), and interfere with healthy social and emotional relationships (Hart et al., 2004). Thus, for children with communication disorders, classroom activities that require student collaboration may create fear and can severely impact a child’s overall wellbeing (Harel et al., 2015). The stress upon children and families suffering from the effects of communication disorders may be preventable with adequate early childhood intervention (Utah Early Intervention Providers Consortium [UEIPC], 2016). Early identification and intervention can reduce the intensity and duration of individual special education services (Boroughs & Carolan, 2018), as well as benefit long-term life outcomes of productivity and quality of life for families and children receiving services (UEIPC, 2016). Preventing communication delays through SPEECH LANGUAGE IMPAIRMENTS IN UTAH 10 screening and intervening at an early age decreases language-based learning disabilities (Wallace et al., 2015). If children are screened at an early age for speech-language delays, and early intervention services are provided for those in need, the frustrations felt by children and their families from the inability to clearly communicate with one another, as well as others in society, can be decreased (McCormack, McLeod, McAllister, & Harrison, 2010). Furthermore, early intervention speech services can help alleviate the emotional outbursts and social problems related to communication inabilities (McCormack et al., 2010; Sugden, Baker, Munro, Williams, & Trivette, 2018). For each of these reasons, early prevention of speech and communication delays is critical (Sugden et al., 2018). Despite research on the importance of early intervention services to alleviate communication impairments many students in Utah begin school with speech-language delays (Utah Children with Special Health Care Needs [CSHCN], 2019; University of Utah Department of Pediatrics, 2021). According to the Utah Department of Health (2015), families in Utah face many challenges when attempting to access speech-language services. Some of these obstacles include too few service providers (Utah Department of Health, Utah Baby Watch Early Intervention Provider List, 2019), a lack of state funding for services (Boroughs & Carolan, 2018; Mandle, 2017), the inability for families to afford private services not covered by health care insurance (Utah Department of Health [UDH], 2015), and poor communication and follow-through from health care agencies to caregivers regarding next-steps after a child is identified as having a need for services (Dixon-Ibarra, MacDonald & Twardzik, 2017). Given the importance of addressing speech-language disorders early, further research is essential to help understand SPEECH LANGUAGE IMPAIRMENTS IN UTAH 11 how and what services are offered in a given area and which barriers may be preventing Utah families from accessing early intervention services. The Impacts of Speech Language Impairments Communication disorders severely impact a child’s development and overall wellbeing. (Hitchcock et al., 2015). Evidence clearly indicates that atypical speech has far-reaching implications throughout the entire life span and is associated with a wide variety of risks lasting well into adulthood, including academic, interpersonal, job security, career abilities and economic achievement (Beard, 2018; McCormack, McLeod, McAllister, & Harrison, 2009). Academic Researchers have long identified children with speech and language impairments as having high incidences of academic struggles (Bishop & Adams, 1990; Catts et al., 2002; McLeod & Apel, 2015). For the child with a speech-language impairment these academic risks manifest as soon as formal schooling begins and the student is faced with the expectation to collaborate and interact with peers and instructors (Hitchcock et al., 2015). Even when speech-language errors have minimal interference with speech intelligibility, they can create barriers to participation and interaction within the classroom for learners (Young et al., 2002). As noted by Beard (2018), communication delays that lead to learned patterns of avoidance compound academic difficulties across curricula. It is critical to note that children whose speech-language errors persist through school age are at a much greater risk of academic deficiencies than their peers (McCormack et al., 2009). The inability to orally produce phonologically correct letter sounds not only endangers proficient reading capabilities (Beard, 2018; McLeod & Apel, 2015; Tomblin et al., 2000) but also impedes proficient writing capabilities (McLeod & Apel, 2015), and the ability to perform SPEECH LANGUAGE IMPAIRMENTS IN UTAH 12 efficiently in math and numeracy (Bishop & Adams, 1990; Catts et al., 2002). As formal schooling progresses, the student’s inability to cope with increasing academic demands can lead to frustration and failure (Beard, 2018). Social and Emotional Studies have found that academic barriers are exacerbated by the limitations communication difficulties have on teacher-child relationships (McCormack et al., 2009). Evidence also suggests that when speech-language errors have even a minor impact on intelligibility, there is a noticeable impact on not just academic performance, but the social relationships in both the academic and social settings (Young et al., 2002). Children with just one or two speech-language errors are judged more negatively than their peers (Young et al., 2002). These negative judgments create insecurity and unwillingness to interact with others (Hart et al., 2004). Unfortunately, this can create trust issues and difficulties in forming friendships (Beard, 2018; Gertner, Rice & Hadley, 1994). Even preschoolers have been found to measure peer popularity based upon communication competencies, expressing more favorable judgment towards those without speech or language impairments (Gertner et al., 1994). Healthy, positive, pro-social and behavioral development for children with speech and language impairments is at risk (Conti-Ramsden & Botting, 1999; Cantwell & Baker, 1987; Fujiki, Brinton, & Todd, 1996; Redmond & Rice, 1998). Speech and language impaired children in the 2-6-year old range display the same amounts of both internalizing and externalizing behavioral problems as their peers with typical language (Carson, Klee, Perry, Muskina, & Donaghy, 1998; Coster, Goorhuis-Brouwer, Nakken, & Spelberg, 1999). While externalizing behavior patterns are consistently the same among speech-language delayed and children with no speech-language delay during the 18–26-month old range, outward acts of aggression can SPEECH LANGUAGE IMPAIRMENTS IN UTAH 13 quickly turn to internalized behavioral problems as soon as the age of 3 years. By the 8-12 years age range speech-language delayed children begin to exhibit significantly more behavior problems overall than their peers, and more internalizing behaviors than externalizing (Coster et al., 1999). Additional standardized tests examining the temperamental characteristics of 6-year-old children, who at age 2 had been identified as slow in expressive language, indicated significantly lower scores than their peers with typical language skills (Paul & Kellogg, 1997). These low scores, taken from average sentence lengths that were produced during spontaneous communication, indicated withdrawn, shy, or aloof behavior patterns (Paul & Kellogg, 1997). Corroborating research reveals that the generalized behavior of 242 children with speech-language delays, studied as they progressed from the age of seven to the age of eleven, and using the Rutter behavioral questionnaire (Rutter, 1967), was characterized as having poor social competence (Harter & Pike, 1984). Within this same group of children, thirty-six percent were regular targets for victimization, a percentage three times greater than children in the age typical speech-language range (Harter & Pike, 1984). Another study of children videotaped during recess displayed them as having significantly higher levels of withdrawn behavior and lower social interaction than their peers (Fujiki, Brinton, Isaacson, & Summers, 2001). Children without verbal interaction skills are viewed as less appealing than their more vocal peers with higher social competencies (Carson et al., 1998). It seems this pattern of withdrawn behavior leads to a vicious cycle of isolation, lower popularity ratings, and higher victimization (Carson et al., 1998; Conti-Ramsden & Botting, 2004). This lack of positive social interaction also means that children are less exposed to peer SPEECH LANGUAGE IMPAIRMENTS IN UTAH 14 language models and may become even more withdrawn over time, further exacerbating speech-language development (Carson et al., 1998; Fujiki et al., 2001). The report indicated that 50% of the 11-year-olds previously mentioned reached clinical levels of depression (Conti-Ramsden & Botting, 2004). These difficulties only increase as the child gets older, extending well beyond high school and throughout adulthood (Brinton & Fujiki, 1999; Fujiki et al., 1996; Redmond & Rice, 2002; Conti-Ramsden & Botting, 2004). Stress The inability to communicate creates undue stress for children with speech-language delays, as well as for the families and caregivers who struggle to understand them (Beard, 2018; McCormack et al., 2010; Sugden, Munro, Trivette, Baker, & Williams, 2019; Wallace et al., 2015). Some of the problems that arise for young children living with a speech-language impairment include the inability for the child to “speak properly,” failure of others to “listen properly” to what the child is saying, and the frustration that ensues (McCormack et al., 2010). It is important to note that more often than not children do not recognize that their communication problems stem from their own speech or language disability, but instead, are based upon the listener’s inability to understand them (McCormack et al., 2010). Familial Communication Parents tend to have a decreased concern regarding their child’s communication difficulties than the child’s teachers do (Coster et al., 1999; McCormack et al., 2010). This finding suggests that parents may not have a sense of the potential long-term risks of speech-language delays (McCormack et al., 2010; Sugden et al., 2019; Wallace et al., 2015). The focus of parents and caregivers usually centers on their own ability to understand the more immediate needs and wants of the child (McCormack et al., 2010; Sugden et al., 2019; Wallace et al., 2015). SPEECH LANGUAGE IMPAIRMENTS IN UTAH 15 If a parent, familiar with the communication patterns of their child, can sufficiently understand the child’s needs, the speech-language difficulty and delay is seen as an issue to work around rather than a disability needing intervention (McCormack et al., 2010). Even when family members and caregivers are familiar with a child’s communication patterns, communication difficulties may arise and frustration, stress and emotional outbursts can occur (Fujiki, Brinton, Morgan, & Hart, 1999; McCormack et al., 2010). Significance and Benefits of Early Intervention Children with speech-language delays and their families and caregivers, have expressed the positive benefits and reduction of stress when they are taught, and employ, early childhood intervention strategies (Beard, 2018; Sugden et al., 2019; Wallace et al., 2015). Speech-language delays are significantly reduced when parental training for appropriate speech and language patterns and critical developmental milestones is provided (Sugden et al., 2019; Wallace et al., 2015). When early childhood intervention is accessible to children with communication delays, stress in the family home decreases (McCormack et al., 2010; Sugden et al., 2019), and children are more academically prepared to begin school (Beard, 2018). Reduced Risks Boroughs and Carolan (2018) indicated that early intervention services drastically decrease the need for individualized special education later on in the academic life of a child identified with a developmental delay. Ensuring parents are aware of the long-term academic risks speech-language delays create and providing families with the necessary information and tools to assess their child’s growth and communication capabilities are key components to enhance academic preparation and to prevent the risk of academic failure in the future life of the child (Beard, 2018). Providing access to quality early intervention programs is of critical SPEECH LANGUAGE IMPAIRMENTS IN UTAH 16 importance for children identified with speech-language delays and or difficulties (Beard, 2018; Boroughs & Carolan, 2018). Given the broad language-based academic obstacles speech delays create for children (Beard, 2018; McLeod & Apel, 2015), preventing the occurrence or reducing the impact is vital for the overall wellbeing of the child, their family and therefore the health of the communities they live within (Beard, 2018; Morin, 2019, 2020). Approximately one-fourth of children screened and identified as late talkers as early as two years of age remain in the low end of standardized language assessments in Kindergarten (Carson et al., 1998). Based on the research, screening for and preventing speech-language delays provides a critical safety net for young children to help prevent the possibilities for a wide variety of social, emotional and academic problems (Beard, 2018; Carson et al., 1998; McCormack et al., 2010; Sugden et al., 2019; Wallace et al., 2015). Brain Development High quality early childhood experiences positively affect brain growth and construction (Fox, Levitt & Nelson, 2010). As babies process information from their environment their brain neurons develop and grow to form neural pathways (Ismail, Fatemi & Johnston, 2017; Morin, 2019, 2020). In response to a nerve impulse from an experience within a child’s surroundings, information is transmitted through the synapses in the brain, and is fueled by chemicals in the brain known as neurotransmitters (Morin, 2019, 2020). The neurotransmitters responsible for powering language skills are heavily reliant upon rich experiences during a child’s development (Fox et al., 2010; Morin, 2019, 2020). Providing sensory rich exposure to the world around them helps a child’s growing brain release those neurotransmitters, and the more often the experiences occur, the stronger the neural pathways become (Fox, Levitt & Nelson, 2010; Morin, 2019, 2020). SPEECH LANGUAGE IMPAIRMENTS IN UTAH 17 Language development is critical between the ages of two and seven (Fox, Levitt & Nelson, 2010; Morin, 2019, 2020). During this time a child is actually learning about the world around them through language provided and taught to them (Beard, 2018; Fox, Levitt & Nelson, 2010; Morin, 2019, 2020). Strong language neural pathways are heavily reliant upon a language rich environment with frequent exposure to new words, more complex sentences, and print resources (Morin, 2019, 2020). A child’s exposure to diverse circumstances helps to refine and strengthen neural pathways and develops flexibility within the circuits of the brain known as plasticity (Fox, Levitt & Nelson, 2010; Morin, 2019, 2020). When children are taught new ways to process information plasticity strengthens within their brains (Fox, Levitt & Nelson, 2010; Morin, 2019, 2020). This is a vital process, since not all children process information the same way (Morin, 2019, 2020). If a child’s processing is delayed or disabled to the point that speech-language milestones are not achieved, then early intervention is necessary and vital for healthy whole brain development, and the earlier it is provided, the better chance a child has for a positive outcome (Beard, 2018; Fox, Levitt & Nelson, 2010; Ismail et al., 2017; Morin, 2019, 2020). Quality of Life Speech and language delays present increased risks for learning disabilities once children begin school (Beard, 2018; Wallace et al., 2015). For children with language and speech delays, the risks for poor reading ability are four to five times greater than for children with appropriate development, and these risks persist throughout adulthood (Beard, 2018; McLeod & Apel, 2015; Wallace et al., 2015). Consequently, once speech-language delayed children become adults, they may hold lower paying jobs and may experience unemployment at greater rates than other adults SPEECH LANGUAGE IMPAIRMENTS IN UTAH 18 (Beard, 2018; Wallace et al., 2015). Thus, the behavior problems and inability to adjust socially due to communication disorders may also continue to affect the child throughout adulthood (Beard, 2018; Jerome, Fujiki, Brinton, & James, 2002; Wallace et al., 2015). Utah’s Early Intervention Crisis Despite the research on the importance of speech and language abilities, many Kindergarten students in Utah are beginning school with severe communication disorders (Kwiatkowski & Mabie, 2019; [CSHCN], 2019; [UDH], 2019; Utah Department of Health, Utah Baby Watch Early Intervention Provider List, 2019; University of Utah Department of Pediatrics, 2021). Providing solutions to the roadblocks that prevent Utah families from accessing high quality early intervention services will reduce the rate of speech-language impairments (Utah Department of Health [UDH], 2015). Ensuring that the intervention needs of Utah’s youngest children are met can help mitigate this crisis (Voices for Utah children, 2019). Speech Delay Prevalence The prevalence of communication disorders is a serious issue in the State of Utah as shown in The Utah Medical Home Portal (University of Utah Department of Pediatrics, 2021). Survey data from 1992 ranked communication disorders in 13th place on the diagnosis prevalence list (University of Utah Department of Pediatrics, 2021). At one child per 38 children, it outranks the 14th most prevalent diagnosis from a 2020 rank of one per every 54 children diagnosed with autism (University of Utah Department of Pediatrics, 2021). The 2014 Utah Children with Special Health Care Needs (CSHCN) survey ranked communication disorders number four at 17.8% on the top diagnosed conditions list, below Autism Spectrum SPEECH LANGUAGE IMPAIRMENTS IN UTAH 19 Disorder at 24.4 % (CSHCN, 2019), conflicting with the Medical Home Portal, but still indicating a significant prevalence in children who are in need of assistance. Lack of Access The high prevalence for speech-language disorders and the low access to services prevents children in need of services from reaching critical milestones (UDH, 2015). Families in Utah, if they are aware, or made aware, of a speech-language issue with their child prior to Kindergarten, will find frustratingly little access to these much-needed speech services (UDH, 2015). According to the Utah Department of Health (2019), the Utah Baby Watch Early Intervention provider list shows only two Speech and Language therapists for all of Weber and Morgan Counties. According to the U.S. census report, the population of children under age 18 in Weber County grew by over 35 percent since 2010 (U. S. Census Report, 2018). The two speech service agencies listed provide speech therapy for not only the population of children in Weber County, but for all of Morgan County as well (Utah Department of Health, Utah Baby Watch Early Intervention Provider List, 2019). That is far too few, and the negative results are clearly indicated by the affected families (UDH, 2015). Families responding to the CSHCN survey indicated speech therapists as being one of the most difficult providers to access (UDH, 2015). Familial Difficulties The CSHCN survey responses revealed multiple roadblocks in accessing providers for children with special health care needs (UDH, 2015). Not only were providers difficult to find, travel time to reach a provider’s office was daunting. Data related to insurance funding found prohibitive costs for families in need of special services. The five most frequently diagnosed conditions, in order, are: developmental delays, autism spectrum disorder, communication SPEECH LANGUAGE IMPAIRMENTS IN UTAH 20 disorders, behavioral disorders and mental health issues. These are needs not typically covered by insurance at all, and may require multiple types of therapy or specialized care, making adequate insurance difficult to find or afford. Additionally, data collected found a need for increased coordination of programs between agencies (UDH, 2015). Potential Roadblocks Families seeking early intervention services have reported frustrations with the lack of clear communication to them, as well as lack of clear communication between agencies of health providers, therapy providers and educational systems (Dixon-Ibarra et al., 2017). The possibility of enrollment of a child into early intervention services are greater when provided by the Department of Health over the Department of Education (Dixon-Ibarra et al., 2017). Implications suggest that enrolling a child into early intervention services seems to be more successful through a state/territory Department of Health as a Lead Agency (Dixon-Ibarra et al., 2017). This is a reasonable conclusion since the first state led agency a family encounters after having a child is the health care system. Once a screening occurs and a diagnosis is made there is an unfortunate high rate of dropout between enrollment and services (Dixon-Ibarra et al., 2017, UDH, 2015). Extreme effort needs to occur to ensure follow through with services and continued contact with families of special needs children prior to the beginning of Kindergarten. This is critical given Utah’s low rank of 49th in the nation for educational funding (Voices for Utah Children, 2019). The State of Utah simply has not been able to keep up with population growth and the increasing demands of the needs of students in K-12 education, let alone early intervention (Voices for Utah Children, 2019). In a 50-State comparison conducted by the Education Commission of the States, Utah is one of 6 states that does not provide State-funded pre- SPEECH LANGUAGE IMPAIRMENTS IN UTAH 21 Kindergarten (Fischer, 2021). Combine that data with the fact that only 20% of Utah children attend full day kindergarten compared with 80% of children nationwide and it is evident that advocacy and State support for early childhood intervention programs is urgently necessary (The Alliance’s Early Success, 2020). Potential Solutions Utah has employed innovative funding resources that may offer opportunities to increase access to high quality preschools and an increase in early intervention services (Boroughs & Carolan, 2018; NCSL, 2020, April 6). Key components to solving this problem could be enhanced pediatric screening for speech and language milestones, and bringing awareness to caregivers of those milestones along with the importance of early intervention if there are delays (Carson et al., 1998; McCormack et al., 2010; Sugden, 2018; Sugden et al., 2019; Wallace et al., 2015). Moreover, in an attempt to mitigate family concerns expressed within the 2013 CSHCN survey, Utah states an intention to begin using the Early Childhood Integrated Data System (ECIDS), which will integrate data from across all early childhood programs in Utah (Utah Governor’s Early Childhood Commission Report [UGECCR], 2021). Innovative Funding Utah’s business friendly atmosphere and strong legislative support for entrepreneurs may hold the key for innovative funding of much needed early childhood education (Boroughs & Carolan, 2018; NCSL, 2020, April 6). In 2014, Utah was the first state in the nation to pass legislation allowing pay-for-success contracts to be utilized for a high-quality preschool program (Boroughs & Carolan, 2018; NCSL, 2020, April 6). The encouraging success of this innovative program offers hope for continued partnerships with businesses for specialized funding of additional early childhood education programs throughout the state (Boroughs & Carolan, 2018; SPEECH LANGUAGE IMPAIRMENTS IN UTAH 22 NCSL, 2020, April 6). The results also showed the early identification and intervention provided by access to high quality preschool reduced the intensity and duration of individual special education services for those children that qualified (Boroughs & Carolan, 2018). Utilizing pay-for-success projects to help provide a greater availability of quality early childhood intervention education programs would be beneficial for students and families as well as taxpayers in Utah (Boroughs & Carolan, 2018). Early Intervention services decrease future healthcare and education costs, as well as benefit long-term life outcomes of productivity and quality of life for families and children receiving services (UEIPC, 2016). Within the group of children receiving Early Intervention services from 2013 to 2016, 35% made enough progress to eliminate the need for further special education services (UEIPC, 2016). Screening Regularly assessing a child’s speech and language for delays through frequent screenings can prevent delays and decrease long-term language-based learning disabilities (Morin, 2019, 2020; Wallace et al., 2015). American Pediatric guidelines recommend screening for delays at every well child visit from 9 to 36 months of age (Morin, 2019, 2020; Wallace et al., 2015). The American Academy of Pediatrics (AAP) well child checkup schedule decreases in frequency as a child grows (AAP, 2018). Once a child turns 3 years of age the checkup frequency becomes annual rather than the bi-annual visits that begin at 15 months of age (AAP, 2018). The importance of screening becomes even more crucial due to the wide gap between doctor visits during the time of critical language development (AAP, 2018). This information supports the necessity to consistently screen for speech and language delays and initiate early intervention services as soon as possible (AAP, 2018; Beard, 2018; Wallace et al., 2015). SPEECH LANGUAGE IMPAIRMENTS IN UTAH 23 As discussed, preventing communication delays through regular screening and intervening at an early age decreases language-based learning disabilities (Carson et al., 1998; Wallace et al., 2015). If children are screened at an early age for speec-language delays, and early intervention services are provided for those in need, the frustrations felt by children and their families from the inability to clearly communicate with one another, as well as others in society, can be decreased (McCormack et al., 2010). Furthermore, early intervention speech-language services can help alleviate the emotional outbursts and social problems that are related to communication inabilities (Carson et al., 1998; McCormack et al., 2010). Parents and caregivers are often not aware of the potential side effects of speech-language disorders and typically do not know the speech-language milestones to watch for (McCormack et al., 2010; Sugden et al., 2019; Wallace et al., 2015). For these reasons, continuous pediatric screening at regular well-baby checkups and early intervention of any speech and communication delays are of critical importance to help reduce speech-language disorders in Utah (Carson et al., 1998; Sugden, 2008). Early Intervention Improvements As previously stated, Utah is in the process of creating a more streamlined procedure for referrals with an improved inter-agency data tracking system in an attempt to better serve Utah families (UGECCR, 2021). There are still significant gaps to address and many questions abound regarding exactly what the restructuring will entail (UGECCR, 2021). Although these changes have not yet been fully implemented, and the effectiveness cannot yet be evaluated, this is a critical step in the right direction in response to the concerns of families surveyed through the CSCHN (UDH, 2013). The ultimate success of these changes remains to be seen (UGECCR, 2021). SPEECH LANGUAGE IMPAIRMENTS IN UTAH 24 According to the Utah Governor’s Early Childhood Commission Report from July of 2020, survey responses from early childhood education stakeholders and physicians revealed multiple screening tools are currently being used to evaluate children’s development (UGECCR, 2021). Governor Spencer Cox is mandating the use of the Ages and Stages Questionnaire-Third Edition (ASQ-3) and the Ages and Stages Questionnaire-Social and Emotional (ASQ-SE) as the universal developmental screening tools to be used throughout the State (UGECCR, 2021). This should help provide some consistency across the screenings that occur (UGECCR, 2021). Within this same survey 323 physicians reported they perform developmental screenings 71% of the time (UGECCR, 2021). These same physicians reported that 62% of the time they “Always” or “Almost Always” share results with the families (UGECCR, 2021). Without a screening, developmental delays are identified 30% of the time as compared to 70-80% of the time with a screening (UGECCR, 2021). The State’s attempt to address these deficiencies could help ensure physicians are screening their patients consistently and communicating to families the implications of the screening results, as is so vitally important. Unknown Factors Many questions remain regarding how to best identify and serve children with speech and language delays. Utah has recently updated their core standards for Early Learning (Utah State Board of Education, 2020). According to this quote on page 3 of the Utah Core Standards For Early Learning from the Utah State Board of Education, “One of the best predictors of reading success is the number of spoken words a preschooler understands and uses.” (Utah State Board of Education, 2020). How this information is being distributed to families and daycare facilities is unknown. SPEECH LANGUAGE IMPAIRMENTS IN UTAH 25 The training levels for each childcare provider are unknown but presumably vary widely. The minimum requirement is to be 16 years of age and complete 20 hours of childcare training each year (Utah Licensing Standards for Day Care Centers, 2021). These presumed variances create an unknown factor in the preparation and training of childcare and preschool workers. It is also unknown if every daycare facility is aware of the speaking and listening Utah State standards for 3 and 4 year olds (Utah State Board of Education, 2020). The ability of childcare centers to provide an observational screening for speech and language skills and share results to families is unidentified. Research has indicated that educating parents on critical communication milestones and providing games and activities can help intervene inaccurate speech patterns and mitigate some language complications (Sugden et al., 2019; Wallace et al., 2015). It is unknown if, how, to what extent, or by whom, speech milestone information is being relayed to parents in Utah. Additionally, the degree to which families are either willing or reluctant to enter their child into speech-language therapy is another unknown variable. If pediatricians consistently refer children to a qualified speech language pathologist, speech and communication delays may be solved prior to Kindergarten (AAP, 2018; Beard, 2018; Wallace et al., 2015). However, therein lies the potential problem of a lack of access to a pediatrician for some families, in addition to the lack of access to speech language pathologists as reported by families in the CSHCN survey (2013). Each of these factors create an unknown percentage of children left without access to critical support services. SPEECH LANGUAGE IMPAIRMENTS IN UTAH 26 PURPOSE Given the importance of addressing speech-language delays early, the purpose of this research was to investigate the unusual number of children who begin Kindergarten in Northern Utah with unidentified communication delays. The target of this study was to identify the specific barriers that are preventing access to speech-language services for families in Utah. In an effort to answer the many questions surrounding this dilemma the following research question will be investigated: 1) What are the experiences of parents of children with communication disorders as it relates to both the referral process and access to speech-language services for their child? METHOD This is mixed methods research study that includes both quantitative and qualitative data collected from both an online Qualtrics survey and three follow-up focus groups that were conducted online using the virtual conferencing platform Zoom. Participants Participants for this study included 93 Utah parents who use social media and/or email, and who have either concerns with their child’s speech and language, or have children with diagnosed communication disorders. Parents ranged in age from 25 – 50 years, the average being 36 years. Most were female (79%). The children of the parent participants were mostly male (70%) and ranged in age from 1 – 26 years, the average being 7 years. The majority of participants (74%) indicated they were Caucasian. Other participants were Hispanic/Latino/Spanish (8%), African American/Black (4%), Native American (2%), Pacific Islander (2%), and Asian American (1%) respectively. SPEECH LANGUAGE IMPAIRMENTS IN UTAH 27 Instruments The Qualtrics Survey Tool was chosen due to the sophisticated ability of this software to provide a variety of templates and generate an online survey. The survey, formulated as a Word document by the researcher, and modified with support from the committee, was copied into the software following approval from Weber State University’s Institutional Review Board (IRB) (see Appendix A). Qualtrics software supports over 100 types of questions, including the yes/no, scale based, multiple choice, and text entry types used by the researcher. The Word document was easily converted in the software into an electronic, online-ready format that could be downloaded or copied and easily shared via a link (see Appendix B). An IRB approved consent form was embedded at the beginning of the survey (see Appendix B). In order to participate, interested respondents were required to sign. Other criteria required for the study was that participants needed to be a parent of a child with diagnosed or undiagnosed speech impairments or concerns and living in Utah. If these criteria were not met, respondents were exited from the survey. Qualtrics permits blocks of questions to be directed to groups of respondents based upon specific criteria. Four blocks were formulated within the survey. The first block contained the consent form and eligibility question. The next block targeted the experiences of parents who responded they had a child who had not yet entered kindergarten and had undiagnosed speech impairments. Another block was designed for parents who responded they had a child with a speech diagnosis, regardless of age. The fourth block was voluntary and involved the demographics of the participants. Parents were invited to answer the survey questions regarding personal experiences concerning their ability to obtain a referral and access speech-language therapy. If parents were SPEECH LANGUAGE IMPAIRMENTS IN UTAH 28 able to obtain early intervention services prior to kindergarten multiple-choice answers included the specific people who helped and the services that were available. More multiple-choice selections were provided for those who were unable to obtain access until kindergarten or later to help the researcher identify specific problems. Qualtrics allowed text entry space for participants to include detailed written information regarding these questions as well. Additional multiple-choice questions were also developed to gather parent knowledge and awareness of speech-language milestones, and if they considered that to be helpful information for their family. At the end of the survey, parents were invited to participate in a small focus group via Zoom to further describe their individual experiences. If “Yes, I am interested.” was selected, Qualtrics sent the participant to another IRB approved consent form specifically designed for the focus group. Upon consent, parents were asked to provide their email and phone number so the researcher could contact them with Zoom meeting information. After providing their contact information, or if the participant declined to join a focus group, parents were thanked for their time and exited from the survey. Four IRB approved questions were developed by the researcher as a means to foster open conversations within the focus groups. These questions were generated as a tool to learn of the individual circumstances of parents. The focus group method provided the researcher with rich and intimate data that proved to be critical for the purpose of this study. Procedures Facebook was used to distribute the survey to a broad population quickly and efficiently. The Qualtrics survey link was shared on the researcher’s and committee member’s personal Facebook pages in order to invite Facebook friends to participate, if eligible. Some of the researcher’s friends also shared the link to their own personal Facebook pages and Facebook SPEECH LANGUAGE IMPAIRMENTS IN UTAH 29 parent groups in which they are involved. Voices for Utah Children, Autism Council of Utah, and an agent/owner of the Horace Mann insurance agency for teachers, were contacted through Facebook Messenger and all shared and distributed the survey on their Facebook pages as well. The committee members also posted the survey to the Facebook pages of the Weber State University Children’s School and the Utah Speech Language Pathologist’s group. Committee members sent professional emails of the survey link to over one hundred undisclosed recipients. The researcher sent emails to the Alpine, Uintah and Weber School Districts, the Utah State School for the Deaf, and the Utah Department of Health Baby Watch program director, requesting permission to distribute the survey within those agencies. While the survey data was still being collected online, the researcher set up the focus group meetings. At that particular time 25 parents had signed up and submitted their contact information. Each of these parents were emailed with three focus group dates and possible times. After 11 responded with their preference, the researcher emailed them Zoom meeting invitations. Three forty-minute meetings were conducted online using Zoom with a total of eight parents participating. SPEECH LANGUAGE IMPAIRMENTS IN UTAH 30 RESULTS Survey data measured the responses parents provided to determine which barriers are the most prohibitive and what resources would be of most benefit in obtaining early intervention services. The researcher compared data sets from parents of children who have not yet entered Kindergarten with the experiences of those whose children have diagnosed communication disorders and access to intervention. Survey data reflects parental knowledge of speech-language milestones and what to do if they have concerns. The degree to which pediatricians are referring for services was answered and analyzed. The researcher analyzed variables and patterns between each group’s ability to obtain referrals and access intervention services. From the analysis, the researcher was able to determine to what extent this problem is connected to the speech and language referral process, and then compared that data to the extent of the problems of access to early intervention speech services. Parents within the Zoom focus group were given the opportunity to express their personal experiences. The researcher obtained vital, in-depth answers to both questions of how speech-language services are successfully obtained and the specific frustrations and roadblocks that prevent them. The quantitative survey data is merged with the qualitative focus group data, forming a more complete analysis. Qualtrics Survey Results The answers to the survey questions revealed very specific quantitative information. Short form answer results also qualitatively specified both the ease and the difficulties families face in obtaining a diagnosis. The experiences of those parents who have yet to obtain a diagnosis and services are revealed as well, and data from both groups will be compared. SPEECH LANGUAGE IMPAIRMENTS IN UTAH 31 A total of 148 Utah parents consented to take the online Qualtrics survey. Of these, 74 had at least one child with a speech-language diagnosis and 19 had concerns but no diagnosis. Not all of the 93 eligible participants answered every survey question. Data for each question reflect percentages of those who answered, rather than the total number of survey participants. Survey results from parents with a diagnosis According to parents of children with a speech-language diagnosis most, 63% (n = 41), were referred prior to Kindergarten. Those referred upon entering Kindergarten equaled 19% (n = 12). The remaining 19% (n = 12) were referred at various grade levels between first and sixth as referenced from parent’s written responses within the question. For parents with a concern prior to a diagnosis most, 71% (n = 45), acknowledged they were able to get a referral and start speech-language therapy right away. The percentage of parents who had concerns and were told to wait by their pediatrician equaled 16% (n = 10). Parents who had concerns but were without access to a pediatrician totaled 2% (n = 1). There were seven parents (11%) who had no concerns prior to Kindergarten. Responses are shown in Figure 1. Figure 1. Parent responses regarding what occurred if they had concerns. 0 10 20 30 40 50 60 70 80 90 100 Got a Referral and Started Right Away Pediatrician Told me to Wait I Did Not Have Concerns I Did Not Have Access to a Pediatrician Percentage of Responses Parent Responses SPEECH LANGUAGE IMPAIRMENTS IN UTAH 32 When asked for the origin of their referral, forty-one percent of families answered “other” and gave a written response. Pediatricians referred 27% (n = 19). General Education classroom K-12 teachers referred 24% (n = 17), while General Education K-12 Speech Therapists referred 3% (n = 2). Preschool teachers referred 3% (n = 2) and preschool speech language therapists referred another 3% (n = 2). Percentages are shown in Figure 2. Figure 2. Overall percentages of who referred according to parent responses. Figure 3 contains the distribution of the written responses families provided in the “other” category. Many in this category, 43% (n = 10), stated they had to seek a referral for their child themselves. Some within this particular group were a certified speech language therapist or had a family member who was, and they were able to make their own referral. Early Intervention referred 26% (n = 6) of these children while family, friends or acquaintances (including one school crossing guard) referred 17% (n = 4). Finally, medical specialists referred 13% (n = 3). 0 10 20 30 40 50 60 70 80 90 100 Other Pediatrician K-12 Teacher K-12 SLT/SLP Preschool Teacher Preschool SLT/SLP Percentage of Responses Parent Responses SPEECH LANGUAGE IMPAIRMENTS IN UTAH 33 Figure 3. Parent written responses to “other” in regard to who referred their child to services. Parents were asked what helped them obtain services after their child’s diagnosis (Figure 4). For those parents who obtained a referral prior to Kindergarten, 26% (n =26) found available speech-language therapy services. Twenty-one percent (n = 21) indicated services were easily accessed. Pediatricians enabled 17% (n = 17) of the families to access services before their child started Kindergarten. Preschool provided services for 9% (n = 9) and insurance paid for 7% (n =7). Figure 4. Responses regarding what helped parents obtain services. SPEECH LANGUAGE IMPAIRMENTS IN UTAH 34 There were a wide variety of reasons parents were unable to obtain services prior to Kindergarten (Figure 5). 24% (n = 8) were unaware of speech issues, 18% (n =6) had no referral for unspecified reasons while 7% (n = 4) said the cost of private therapy was prohibitive. One parent each responded that insurance would not pay, there was a lack of local services available, and that the time commitment was a burden. Figure 5. Parent responses to what inhibited access to services. Figure 6 contains the distribution of the written responses families provided in the “other” category regarding what hindered access to services (see Appendix C). Three parents were told to wait by a pediatrician or a teacher. Parents were told by the pediatrician that he was “not worried about speech yet”, and the preschool teacher was “monitoring it”. One of these parents was told by Head Start when they tried to enroll in “March or April” of that particular year that it would be “pointless” and to wait until Kindergarten. Two of the parents who selected “other” said they never received a call back when they inquired about services. Another two were told their child did not qualify based on assessments. SPEECH LANGUAGE IMPAIRMENTS IN UTAH 35 One of these children was four years old at the time and was taken to private therapy. The other qualified in First grade. Figure 6. Parent written responses to “other” regarding what prevented access to services. Survey results from parents without a diagnosis Sixty-one percent (n = 11) of parents of children without a diagnosis indicated they had expressed their concerns regarding their child’s speech to their pediatrician. Twenty-eight percent (n = 5) did not express concerns and 11% (n = 2) said they did not have access to a pediatrician (Figure 7). SPEECH LANGUAGE IMPAIRMENTS IN UTAH 36 Figure 7. Frequency of parent responses when asked if they had expressed their concerns to their pediatrician. When asked if their pediatrician had expressed concerns about their child’s speech-language to them, 46% responded yes. Of those same 24 parents, 36% indicated their pediatrician made a referral after concerns were expressed. Another 36% were told not to worry about the speech-language and/or to wait to see what would happen. The remaining 28% reported they accessed early intervention themselves (Figure 8). Figure 8. Frequency of responses regarding what occurred after pediatrician expressed a concern. 0 10 20 30 40 50 60 70 80 90 100 Told Pediatrician Did Not Tell Did Not Have Access SPEECH LANGUAGE IMPAIRMENTS IN UTAH 37 In an effort to learn if speech-language impairments were affecting if their child hesitates, is uncomfortable, or is reserved when speaking, 33% answered that “sometimes” their child responds that way. Another 26% of parents selected either “always” or “often”. The answer, “seldom” was selected by 29% and the remaining 12% selected “never” in response to that survey question. Parents were also asked how confident they were in their knowledge of speech-language milestones. Forty-eight percent selected “somewhat confident” while 39% were “not at all confident” and 13% stated “very confident”. Seventy-eight percent of these same parents expressed that learning about speech milestones and having games and strategies to help their child communicate would help their family. When asked if access to high quality preschool would help their child’s communication, “maybe” was selected by 36% and 26% answered “definitely”. “Probably, but I cannot afford it” was chosen by another 26%, while 13% indicated their child was in preschool but it was not helping their child’s communication needs. Short answer survey results When asked to specifically describe what helped and what hindered access to services in short answer form, 54 parents responded. Many of those provided in-depth information, which will be broken down by frequency and shared quantitatively. Responses that will be of most help to this research will also be shared qualitatively within this section. Each of their complete responses will be shared in Appendix C. Specifics that helped parents access services. Many parents responded that the most helpful service for them was therapy that was provided in school once kindergarten began or SPEECH LANGUAGE IMPAIRMENTS IN UTAH 38 after (n = 16). This particular quote provides much needed inside information for the purposes of this study: • “My son receives services because of school. I learned to understand him before so wasn’t sure he needed it, but most people could not understand him.” Access to early intervention was listed as most helpful for parents who were able to obtain therapy prior to kindergarten (n = 14). The importance of this is noted in the following parent’s quote, “We were lucky that I knew about the early intervention program. I don’t think it is a well-known program, and it isn’t available anymore. Getting speech assistance early really made a huge difference in my child’s speech and language abilities.” Self-advocacy was also noted as a quality that gave parents the ability to access services (n = 13). The in-home services provided throughout the early intervention programs was listed as helpful by seven parents. Five parents reported their pediatrician helped them, while another five reported that a family member or friend familiar with speech-language issues encouraged them to seek intervention. Three parents wrote that awareness of school district services prior to kindergarten was helpful. Another three parents indicated they had services provided due to the severe health issues of their child. Two parents stated they had the ability to pay for private services and one parent reported their private health care insurance covered speech-language services. Additionally, one parent stated that the speech strategies learned in a Birth-to-Three parent program were beneficial. Specifics That Hindered Parent’s Access to Services. This section will provide details from families regarding the specific difficulties they faced when attempting to secure a referral and find speech-language therapy for their child. Parent quotes state that they “had to figure SPEECH LANGUAGE IMPAIRMENTS IN UTAH 39 everything out on my own” or “research on my own”, and “had to push” and work through the system by themselves (n = 12). Seven stated that their pediatrician would not give a referral, and the cost of private services was a hindrance for five of the participants. This parent’s quote provides a summary of these responses: • “I had to research on my own because pediatrician wouldn’t refer us even though my child was over two years old and couldn’t say a single word. I found a speech therapist but insurance doesn’t cover high costs.” (see Appendix C). Additional obstacles, noted by four parents, were the lack of awareness of speech implications, and testing thresholds and evaluation issues that prevented access to services. One parent attempted a referral for her child at the age of 2 years, another at 4 years, and this parent at 3 years of age: • “I took my son when he was about 3 for a speech evaluation. He was in the 12% and you have to be at 6% or below to qualify. Our family was very frustrated because we had a hard time understanding him and others did too. I ended up paying for private speech lessons till he finally qualified in kindergarten.” Four other parents had complaints of services from providers who were not actually speech language therapists, or received services that they felt did not result in adequate progression of their child’s communication abilities. A lack of available appointments, services not covered by insurance, no response from Early Intervention, and the time commitment for applying for and driving to services were listed as barriers at the rate of two parents each. Income guidelines were indicated as a prevention to access of early intervention services by one parent in the survey written response area. There are State and Federally funded programs that are free for those who qualify and some programs operate on a sliding fee scale SPEECH LANGUAGE IMPAIRMENTS IN UTAH 40 (https://rules.utah.gov/publicat/code/r398/r398-020.htm). Utah State policy indicates that children will not be denied access to services based upon inability to pay if they provide proof of income (https://rules.utah.gov/publicat/code/r398/r398-020.htm). The district this parent consulted is unknown. Focus Group Results Three focus group dates were set up to accommodate participants, and to help keep the groups within a manageable size. A total of eight parents participated in the focus group sessions. Two of the parents were a married couple representing one child. There were three participants who attended the first meeting, three who attended the second meeting, and another two were in the final meeting. Most of the parents were female (n =7). The ages of children of the focus group parents ranged from 18 months to 7 years. The small structure of the Zoom meetings allowed for intimate and open conversations. The results from the comments of the eight participants from all three focus groups were categorically combined into the identified key themes that emerged from the conversations. The answers to the first two questions addressed here are listed based upon the frequency participants responded with the same answers. Parent quotes answering all four focus group questions were transcribed (see Appendix D). Their answers were not solicited and participants who responded with the same answers were often not involved in the same focus group. Who, or what, helped you access services? From the seven children represented, 57% of parents (n = 4) responded they requested a referral for services themselves. These same parents reported they were encouraged to seek help from their own mother (n = 2), or their neighbor (n = 2). The neonatal intensive care unit (NICU) SPEECH LANGUAGE IMPAIRMENTS IN UTAH 41 referred one child to services and one pediatrician referred another. Parents (n = 2) also indicated that being open and receptive to the need for services was an important quality to possess. What were the biggest challenges you faced? Learning how to be a self-advocate and navigate the system to find services was at the top of the list in response to this question (n = 6). Pediatrician reluctance or refusal to give a referral also created difficulty for five of the seven children in these families. Testing thresholds eliminated four children between the ages of two and five years from qualifying for services according to parents. One child is five years old, cannot be understood, and still does not qualify based upon the assessment. Some parents admitted their own reluctance to pursue services was a challenge (n = 3). Their reasons included a lack of awareness of “normal” speech (n = 2) and feelings of being an inadequate parent (n = 1). One parent said she faced a challenge when advocating for the speech-language needs of a family member. Negative past personal experience with special education prevented the parent from placing their child into the system. Each of the parents with school-aged children (n = 4) noticed the progression of speech-language skills dropped off once school began. The reasons given were the limited amount of time a child has with the school therapist as well as the lack of parental involvement during sessions. Parents stated there was inconsistent feedback from therapists and that they were not being taught how to work on the skills at home. Other challenges reported by two parents were financial policies that restricted their access to district programs based upon household income guidelines. Parents were not specific regarding which Early Intervention program they were unable to access. SPEECH LANGUAGE IMPAIRMENTS IN UTAH 42 Two parents stated there is a lack of access to affordable, high quality preschools that provide speech therapy. One parent said there were no speech screenings available for her child at school due to case overload. Another said the challenge of chronic ear infections prevents adequate speech progression. What would be of most benefit for families in this same situation? The complete and various answers to the next two questions can be found in the transcription (see Appendix D). The answers that were most emphasized by parents will be listed here. Some direct quotes are also added so the “voice” of the parent can be heard. Referrals and information from pediatricians was the number one response to this question, as attested in this quote: • “Referrals, and if pediatricians would give you all [emphasis added] the options available; the insurance options and different program options. Knowing all of that would help.” The two parents whose pediatricians advocated for them spoke of how critical that help turned out to be. Parents without that help emphasized how important it is to become your child’s advocate: • “If you are not your own advocate, there will be trouble.” This self-advocacy includes the importance of understanding that even though speech assessment scores may look “great” parents need to know where to go and what to do if there is still a need for speech services: • “His speech scores looked great, but he still needed speech services.” SPEECH LANGUAGE IMPAIRMENTS IN UTAH 43 Parents indicated speech guidelines and knowledge of milestones would be helpful tools. It was also stated that many parents are not aware that local school districts will offer services prior to kindergarten. Early intervention home visits were reported as another benefit. What additional information would you like to share? Parents want lawmakers to understand that early intervention “will save money in the long run”. Early intervention was also indicated as an important component to brain development for children in need of services. The need for pediatrician support to acquire services was mentioned throughout the focus groups. The most frequent response from each focus group was that preschool was the greatest assistance, especially if private therapy was not provided through insurance and out of pocket expense was unaffordable. • “Preschool was helpful. I could not afford private therapy.” The importance of preschool and early intervention is also emphasized by these three quotes: • “My child’s speech progressed much further before Kindergarten because I could be involved in the therapy and had direct contact with the therapist at each session.” • “Before they turn five you get a lot of notes, but in school you do not get the same communication.” • “There are time limits for school therapy. If you wait until Kindergarten, it is too late.” SPEECH LANGUAGE IMPAIRMENTS IN UTAH 44 DISCUSSION The combined research results from the survey and the focus groups indicate that both the speech-language referral process and access to services present many challenges for parents seeking guidance and help for their child prior to Kindergarten. The data reflect the same issues from the previous research conducted in Utah (CSHCN, 2019; UDH, 2015; UGECCR, 2021), while also providing deeper insight. The outcomes presented here help explain why so many children begin school with speech and language issues. Survey Interpretations Parents with a child who began speech therapy during Kindergarten or after indicated a high satisfaction rate for the school system referral process. Once school begins, the child’s teacher usually makes the referral, and access to school therapy is simplified for the parent. Services are provided without a fee and occur during the school day, so there is no need for additional transportation. However, as is reiterated by parents within the focus groups, waiting for school to begin is too late. Children who are hesitant, uncomfortable or reserved when speaking have a hard time forming those crucial friendships that make school a fun and happy experience. As reported by their parents, 59% of children in this study fall into this category. Their ability to form healthy social relationships with others is at risk as indicated by Hitchcock et al., (2015) and Hart et al. (2004). This reservation to speak will impede their ability to comfortably interact and collaborate within a classroom (Hart, Fujiki, Brinton, & Hart, (2004). The children unable to access services until Kindergarten will face many academic challenges (Beard, 2018; Catts, Fey, Tomblin, & Zhang, 2002; McLeod & Apel, 2015; Tomblin, Zhang, Buckwalter, & Catts, 2000). SPEECH LANGUAGE IMPAIRMENTS IN UTAH 45 Many families experienced difficulties when attempting to access a referral and obtain services. It can be assumed that these difficulties must exacerbate the rate of stress and frustration brought on by their child’s inability to communicate clearly. According to McCormack, McLeod, McAllister, & Harrison (2010) early prevention of this stress is an important element for the health of these families. Data provided by parents revealed three key factors preventing access to services for families prior to kindergarten. These three factors are: parents unaware of their child’s speech-language issues, those whose pediatrician told them to wait for kindergarten, and those who did not have access to a pediatrician. The combined total of these factors is equal to the amount of children associated with this study who began kindergarten without a referral. These factors can be linked to the percentage of time Utah physicians reported screening their patients and communicating results to families (UGECCR, 2021). This information helps answer some of the unknown issues this study hoped to learn regarding referrals from pediatricians. The research of Dixon-Ibarra et al. (2017) which links successful enrollment in early intervention services directly to a health care provider is an important component of this study. Survey Implications It is implied from the survey that support and guidance from a perceived authority figure, i.e., a doctor or a teacher, is vital. One parent’s quote reflects this: • “I noticed he had a small problem but didn’t realize the seriousness until his teacher mentioned.” Access to intervention also relies upon appropriate tests and assessments as well as parental knowledge of speech milestones: SPEECH LANGUAGE IMPAIRMENTS IN UTAH 46 • “My pediatrician said to not worry, but I new [sic] my son was struggling and I found a clinic that would do a quick assessment…” Survey answers also imply that parental awareness of the importance of their child’s communication ability could help mitigate some aspects of the problems. The necessity of this awareness is referenced in the research conducted by Beard (2018) and McCormack et al. (2010). If parents are aware of the issues of their child’s speech and language, it can be assumed they will seek services. The direct quote from the survey lends deeper understanding to the thoughts many parents must have: • “I kept putting it off thinking he would start talking on his own.” Early intervention was noted as an element of success for most families. This is encouraging news for those who are able to access it and, as noted earlier, foundationally critical (Beard, 2018; Sugden et al., 2019; Wallace et al., 2015). Parents share their thoughts within these quotes: • “The school district had an early intervention program where, if qualified, a speech pathologist made 45 minute home visits 2 times a month.” • “…we live in Canyons District and once we knew we needed help we were able to get pre-k meeting with our speech therapist at the school.” Within this study many parents expressed frustration with early intervention services. These quotes from the survey note some of the difficulties parents faced: • “Services seemed impossible to get…I never got anywhere until my son started kindergarten.” • “I would have liked more hours and choice of provider. She was a poor fit.” SPEECH LANGUAGE IMPAIRMENTS IN UTAH 47 The survey answers offered some insight to another unknown factor regarding the quality of services here in Utah. In the survey, parents indicated the need for consistent high-quality early intervention services. The importance of early opportunities is explicitly expressed as referenced earlier in the work by Boroughs & Carolan (2018). Focus Group Interpretations Parents involved in the focus groups provided valuable first-hand knowledge of the circumstances Utah families face. As parents listened to each other’s experiences, they were surprised by the differences of their situations. Nevertheless, within those differences clear patterns of similarities emerged, giving an indication of distinct areas of difficulties, as well as services that were of greatest benefit. Based upon vocal expressions and the tone of words used, the overall position each participant took was one of frustration over the system and their lack of knowledge of how to navigate it. This provides direct evidence of the impact of physicians communicating with families just 62% of the time families (UGECCR, 2021). Even if the process for referral and access to services was smooth there were still issues each parent faced. The parents with the child who had been in the NICU expressed their concern over their own lack of knowledge for the expected rate of their child’s speech development, even though they had a team of doctors working with their family. They also expressed their concern that the funding for the program they had been referred to was going to be cut. Families are facing difficulties due to Utah’s lack of funding for early intervention services (Voices for Utah Children, 2019). If parents who have incredible support from a team of doctors are confused, we can draw conclusions of how much more parents must struggle when they have limited or no support from their child’s doctor. This quote exemplifies the struggle: SPEECH LANGUAGE IMPAIRMENTS IN UTAH 48 • “The fact that I heard about it from a neighbor rather than a doctor! [Looks down, shakes head] It is not coming from the doctor…it is not easy…it is so difficult to get answers…” These discussions give evidence that parents want pediatricians to take the time to identify and refer their child for services. Parents also expressed the need to be made aware of speech guidelines and expectations, as well as answers as to where to find, and how to access services. There is clear evidence from this research that parents are hoping for succinct information and clear communication regarding the need for services, access to services, and an understanding of all the options available to them. Financial ability and insurance coverage created a wide disparity in the ability of parents to access services. Boroughs & Carolan (2018) and Mandle (2017) addressed the lack of state funding directly affecting the opportunities families are privileged to access. In 2015 the Utah Department of Health also reported that the lack of insurance coverage is impacting families. Data from this study supports this previous research. Several families had the ability to try a myriad of services to ensure their child was having their needs met. For those families without that ability, their situation is a painful one to hear and can make access to adequate services impossible. The following quotes from families make clear their frustration: • “Expense for private therapy is a huge concern. It is $75 per 25-minute session. Insurance will only cover 25 minutes per week and 60 lifetime visits.” • “…at this point, I feel like I am just counting down the days until school begins in the fall. He is starting school, and he cannot speak! Finding a preschool that works with speech is difficult, and I don’t know where to turn. We did not qualify for the district preschool because we make too much money. They changed their policy and won’t allow SPEECH LANGUAGE IMPAIRMENTS IN UTAH 49 for any parents to pay. They only accept families who make under a certain amount of money.” Although it appears on multiple local district websites (reference withheld as a way to protect the anonymity of the districts) that no family will be turned away for an inability to pay based upon the sliding fee scale, this parent indicated they were unable to access services. Some families within this group indicated early intervention was not helpful. The reason they each gave was that they encountered under qualified therapists: • “With my second son early intervention was not helpful. I finally learned that the therapist working with him was not actually a speech therapist…”, • “It was not a good experience. They did not have a speech therapist at all until March [2020] and then everything shut down due to COVID-19.” • “She was not a very effective therapist. She kept saying, ‘Let me watch you interact with him.’ She didn’t seem to know what she was doing. Then I found out she was not really a speech therapist!” • “The therapist did not have any ideas and was not qualified. She just wanted to watch him play and told us to do the same thing over and over again.” These data provide support that the barrier to consistent, high quality intervention, as previously echoed by the Utah Department of Health (2015), continues to be a problem for families. Many of these families were also affected by the thresholds of the speech-language assessments and were denied services even though their child was in critical need. This phenomenon is forcing some Utah families to wait until Kindergarten for speech services. SPEECH LANGUAGE IMPAIRMENTS IN UTAH 50 • “They said he had only one thing wrong with his speech but the one thing is so bad not many people can understand him. And now he is starting kindergarten in the fall but he cannot be understood!” • “When I took her in for her evaluation they said she did not qualify because she could say individual words. Yes, she could say one word at a time just fine but when she tried to blend words together in a sentence she just lost it!” • “My child did not qualify for speech services but one month later was diagnosed with Autism. I felt like, how could she not qualify?” As previously noted by several parents, as well as the research conducted by Wallace et al. (2015), waiting for kindergarten is too late. Every parent, 57% (n = 4), whose child had started school spoke about the drop off in the progression of their child’s speech and language once they transitioned to school-based therapy. Referring back to the research conducted by Beard (2018), parental knowledge and awareness are critical tools for a child’s communication capabilities. The inability for parents to participate in the therapy at school prevents the opportunity to learn critical skills to practice at home. The lack of consistent communication from the school therapist was also mentioned as a prohibitive issue. Another concern parents expressed with school-based therapy was the lack of time for the child to be with the therapist due to caseloads. Focus Group Implications The focus group data supports and reverberates the survey implications discussed earlier. Within each focus group, parents gave clear indications of the importance to understand and be aware of speech milestones and guidelines as well as be able to advocate for the needs of their child. Although, as indicated, those parental strengths are not enough to ensure success when the SPEECH LANGUAGE IMPAIRMENTS IN UTAH 51 testing thresholds continue to deny access to services. The consequence from this misfortune is clearly a contributor to the problem of children beginning Kindergarten with severe communication issues. There is hope that the use of the ASQ screening tools will help provide access to services for more children in need (UGECCR, 2021). Other implied factors are the disparities and inequalities in the ability to access services based upon income guidelines for early intervention programs and the excessive costs of private therapy. The families involved in the focus groups had a wide variety of family health insurance coverage. Some had insurance that covered services. Others with inadequate coverage through their private insurance were able to access services because they met the criteria for financial guidelines. For those without adequate coverage, and who earn more than the income limit to qualify for services but not enough to pay for private services, the consequences are evident, and dire (Voices for Utah Children, 2019). These data present a clearer understanding of the experiences of parents seeking access to speech-language services. The evidence implies that a lack of awareness of speech milestones, knowledge of how to navigate the system, testing thresholds, and services provided based on income levels are all key factors resulting in negative outcomes. Utah is not providing the early intervention services families need, as was previously indicated by Voices for Utah Children (2019) and the Utah Department of Health (2015). Limitations A regrettable limitation is that the survey was not translated from English into any other language. This eliminated wide populations of parents from participating. Likewise, the focus groups did not offer an interpreter. Deeper insight into communities who face unique and SPEECH LANGUAGE IMPAIRMENTS IN UTAH 52 challenging situations could not be collected. It is unfortunate that this important and valuable information was not included in this research. Additionally, this research became an effort to investigate the practical difficulties families face with a child in need of special services. In an effort to remain focused on those specific issues, parent’s experiences with the frustration and behavior stemming from day-to-day communication difficulties are not included. The social and academic experiences, and the emotional concerns felt by the children of the parents involved in this study, were also not studied. Participants were not asked the age of their child when they first sought a referral. Once a child reaches 3 years of age checkups become annual exams, changing from the 1- 6 month schedule from birth to two and a half years. A child will not typically visit a doctor for a screening between the ages of 3 and 4 years. This is a critical period for speech and language development. It is impossible to ascertain the developmental age implications upon the results of this research as it pertains to the well child checkup schedule. Teacher perspectives of the effect of speech and language communication issues within the classroom were not investigated. Referring students for speech-language services is time consuming for classroom teachers with large class sizes. The implementation of Response to Intervention (RTI) requirements added an additional responsibility to the demands of a teacher’s time (https://utahparentcenter.org/resources/rti-umtss/rti-in-utah/). Also, most Kindergarten classes in Utah operate on a half-day schedule, further exacerbating time constraints. The full effect of these complications leaves an unknown upon the ability to adequately serve the speech-language needs of Utah children already enrolled in Kindergarten and beyond. SPEECH LANGUAGE IMPAIRMENTS IN UTAH 53 The COVID-19 pandemic also had many affects upon the results of this survey. Utah’s Baby Watch Child Find program’s ability to identify and refer children was reduced. The quality of services that were provided was also impacted by the inability to conduct face-to-face therapy. The quality, education, and experience of each particular therapist providing services present an unknown factor, as does the impact of the pandemic. Facebook turned out to be a difficult tool for distribution. Many personal friends who are either teacher colleagues or principals did not share the survey on their Facebook page as had been anticipated. Individual schools contacted via email or Facebook also refused to share the link for various reasons. These factors severely impacted the ability to reach Utah parents. Four out of five school districts contacted were also not willing to distribute the survey. Due to COVID-19, Utah State School Districts were inundated with State and Federal surveys directed to teachers in an attempt to figure out how to best meet the needs of students during the pandemic. The one willing district expressed extreme concern about adding anything more to faculty responsibilities. At that point in time during the research, the answers collected from the survey and focus groups were already creating a pattern, indicating a clearer understanding of the issues. It was decided that the survey would not be further distributed. Despite these limitations, the data offer consistent results. The research provides an accurate understanding of the experiences of Utah parents of children with language impairments as it relates to both the referral process and access to speech services for their child. Suggestions for Future Research Further research into the success of the Child Find Baby Watch policy changes will be necessary as the program is implemented over the course of the next several years. It might be beneficial to evaluate how the use of the ASQ-3 and ASQ-SE screening tools provide access to SPEECH LANGUAGE IMPAIRMENTS IN UTAH 54 intervention compared to the rate of access families currently receive. And, given the high frequency parents expressed their desire for physician communication, continued research is required regarding the amount of time doctors consistently screen and share results with families. Additional ideas for future research might be to investigate the relation between the decreased frequencies of well child visits during the critical ages of two and seven (Fox, Levitt & Nelson, 2010; Morin, 2019, 2020), upon the rate of screenings and referrals. Utah doctors have reported they are not screening 100% of the time (UGECCR, 2021). The additional factor of the length of time between visits may have a role in this issue. Studies focusing on how to best provide parental awareness of speech milestones and implications is another important area that needs to be explored. Parents involved in this study have clearly indicated this need. Solving this question could help balance the issues created by the length of time between well child checkup screenings. As State program changes develop, cost comparisons between early education and intervention programs versus the cost for later special education needs should be compared. Utah could be contributing to the need for special education based upon the lack of funding for quality early education programs (Boroughs & Carolan, 2018). The correlation should be investigated. Healthy brain development, a concern noted in the research by Fox et al. (2010) and Morin (2019, 2020) and also brought up by parents in the focus group, is impeded when early opportunities and language is delayed. Research into this area can help determine if early intervention contributes to brain functioning more adequately than remedial services later on. The rate kindergarten teachers refer is another important factor to study given that pediatricians are telling parents to wait. A half-day schedule combined with the rigorous expectations of academic growth for students does not always allow for adequate time to SPEECH LANGUAGE IMPAIRMENTS IN UTAH 55 successfully perform the RTI requirements. This puts a child at risk of further delays to adequate intervention services. Research regarding the caseloads of speech language therapists in schools is another important area worthy of investigation. Studies upon school size, the ratio of speech language referrals per therapist and the subsequent effect on services during school hours would be helpful information for future decisions. Conclusion As indicated within the research, a streamlined referral process and sufficient access to quality services are the circumstances parents anticipate when seeking help for their child. Current policy operations make equitable opportunities to Early Intervention speech and language therapy difficult, and sometimes impossible, to distribute to families in need. Utah’s attention to these policy concerns can ensure children from birth to 5 years are on track and ready to succeed in school. The purpose of this research was addressed through the detailed experiences revealed by parents. The need to be made aware of speech milestones and the expectation to be provided guidance and assistance were indicated as elements that affect the rate of referrals and therapy. Data provide evidence that pediatricians and family doctors have a lead role and responsibility in these events. Research results also indicated that formal norm-referenced assessment might prevent access to services for particular children in need. Furthermore, the lack of state funding, insurance provisions and family income guidelines each create circumstances that can be prohibitive for families. Based upon the analysis of all combined data it can be concluded that addressing these issues will enable Utah families to acquire the Early Intervention services they SPEECH LANGUAGE IMPAIRMENTS IN UTAH 56 require and will then reduce the number of children beginning Kindergarten with speech language impairments. SPEECH LANGUAGE IMPAIRMENTS IN UTAH 57 REFERENCES AAP Schedule of Well-Child Care Visits. 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Journal of Child Psychology and Psychiatry, 43(5), 635-645. doi:10.1111/1469-7610.00052 SPEECH LANGUAGE IMPAIRMENTS IN UTAH 64 APPENDICES Appendix A: Weber State Institutional Review Board Letter of Approval Appendix B: Qualtrics Survey Appendix C: Survey Text Box Responses Appendix D: Focus Group Transcriptions Categorized by Questions SPEECH LANGUAGE IMPAIRMENTS IN UTAH 65 Appendix A Institutional Review Board Letter of Approval SPEECH LANGUAGE IMPAIRMENTS IN UTAH 66 February 25, 2021 Natalie Williams Students, Teacher Education Re: Expedited Review - Initial - IRB-AY20-21-177 Communication Disorders in Utah Dear Natalie Williams: Weber State Institutional Review Board has rendered the decision below for Communication Disorders in Utah. Decision: Approved Selected Category: 5. Research involving materials (data, documents, records, or specimens) that have been collected, or will be collected solely for nonresearch purposes (such as medical treatment or diagnosis). 6. Collection of data from voice, video, digital, or image recordings made for research purposes. 7. Research on individual or group characteristics or behavior (including, but not limited to, research on perception, cognition, motivation, identity, language, communication, cultural beliefs or practices, and social behavior) or research employing survey, interview, oral history, focus group, program evaluation, human factors evaluation, or quality assurance methodologies. Findings: The PIs have updated your survey document to include a yes/no question at the end of the survey, asking participants if they want to participate in the focus group, where upon if participants say "yes" to wanting to participate they are taken to a separate survey keeping their identifiers separate from the survey questions. Research Notes: The PIs have updated your survey document to include a yes/no question at the end of the survey, asking participants if they want to participate in the focus group, where upon if participants say "yes" to wanting to participate they are taken to a separate survey keeping their identifiers separate from the survey questions. You may proceed at this time. Federal regulations require that after the committee has approved your study, you may not make any changes without prior committee approval except where SPEECH LANGUAGE IMPAIRMENTS IN UTAH 67 necessary to eliminate apparent immediate hazards to the subjects. Further, you must report to the committee any changes that you make and any unanticipated problems involving risks to subjects or others that arise. If you have any question please contact your review committee chair or irb@weber.edu. Sincerely, Drs. Hubler and Toone College of Education Weber State Institutional Review Board SPEECH LANGUAGE IMPAIRMENTS IN UTAH 68 Appendix B Qualtrics Survey SPEECH LANGUAGE IMPAIRMENTS IN UTAH 69 Start of Block: Default Question Block Q4 IRB STUDY #AY20-21-177 WEBER STATE UNIVERSITY INFORMED CONSENT Communication Disorders in Utah You are invited to participate in a research study of speech service accessibility in Utah. You were selected as a possible subject because you are a Utah State resident with a child in need of speech language services. We ask that you read this form and ask any questions you may have before agreeing to be in the study. The study is being conducted by Principal Investigator, Natalie Williams PH.D., and primary contact Laura O’Donnell, through Weber State University Department of Education. It is funded by Weber State University. STUDY PURPOSE The purpose of this study is to identify the specific barriers preventing access to speech services for families. NUMBER OF PEOPLE TAKING PART IN THE STUDY: If you agree to participate, you will be one of approximately 100 subjects who will be participating in this research. PROCEDURES FOR THE STUDY: If you agree to be in the study, you will do the following things: First, you will answer questions in a brief survey relating to your child’s speech and your experiences acquiring speech language services. Demographic questions will be asked in order to determine if and how the ability to access speech services is affected by that criteria. Then, if you are interested, you will be asked to join a Zoom focus group meeting with the primary contact and other parents to discuss in detail your own personal experiences of the process. This focus group will provide vital information for the researcher about specific experiences that cannot be discovered through the survey. If you agree to participate you will be directed to a completely separate survey where you will provide contact information that will be available solely to the researchers. SPEECH LANGUAGE IMPAIRMENTS IN UTAH 70 RISKS OF TAKING PART IN THE STUDY: For face-to-face research, the risks include the possibility of being infected by the novel coronavirus 2019 (COVID-19) or other communicable diseases. During this research there will be no face-to-face interaction. The risks of completing the survey include being uncomfortable if you have had difficulty obtaining speech language services and your child was adversely affected. Participating in the Zoom focus group poses the risk of loss of confidentiality. BENEFITS OF TAKING PART IN THE STUDY You will not receive payment for taking part in this study. There may be no direct benefit to you for taking part in this study. Your participation will help the researcher learn what families go through when a child needs speech language services. This may lead to changes in the system that could help children and their families in the future. ALTERNATIVES TO TAKING PART IN THE STUDY: You may participate in the Qualtrics survey without participating in the Zoom focus group meeting. COSTS/ COMPENSATION FOR INJURY In the event of physical injury resulting from your participation in this research, necessary medical treatment will be provided to you and billed as part of your medical expenses. Costs not covered by your health care insurer will be your responsibility. Also, it is your responsibility to determine the extent of your health care coverage. There is no program in place for other monetary compensation for such injuries. However, you are not giving up any legal rights or benefits to which you are otherwise entitled. If you are participating in research which is not conducted at a medical facility, you will be responsible for seeking medical care and for the expenses associated with any care received. CONFIDENTIALITY Efforts will be made to keep your personal information confidential. If you would like to participate in the Zoom focus group meeting, in an effort to help protect your identity, you will be asked permission to be sent to a completely separate survey where you will provide contact information. We cannot guarantee absolute confidentiality. Your personal information may be disclosed if required by law. Your identity will be held in confidence in reports in which the study SPEECH LANGUAGE IMPAIRMENTS IN UTAH 71 may be published and in password encrypted databases on Weber State University servers in which results will be stored. Hard copies of any information will be stored in a Weber State University locked file cabinet. Solely the Principal Investigator and the Primary Contact will have access to personal information, including the video taped Zoom focus group meeting. All information will be destroyed within three years. Organizations that may inspect and/or copy your research records for quality assurance and data analysis include groups such as the study investigator and his/her research associates, the Weber State University Institutional Review Board or its designees, the study sponsor, Weber State Department of Education, and (as allowed by law) state or federal agencies, specifically the Office for Human Research Protections (OHRP) and the Food and Drug Administration (FDA) [for FDA-regulated research and research involving positron-emission scanning], the National Cancer Institute (NCI) [for research funded or supported by NCI], the National Institutes of Health (NIH) [for research funded or supported by NIH], etc., who may need to access your medical and/or research records. CONTACTS FOR QUESTIONS OR PROBLEMS For questions about the study, contact the researcher Laura O’Donnell at 801 626 6000 or the researcher’s mentor Natalie Williams PH.D. at 801 626 8654. For questions about your rights as a research participant or to discuss problems, complaints or concerns about a research study, or to obtain information, or offer input, contact the Chair of the IRB Committee IRB@weber.edu. VOLUNTARY NATURE OF STUDY Taking part in this study is voluntary. You may choose not to take part or may leave the study at any time. Leaving the study will not result in any penalty or loss of benefits to which you are entitled. Your decision whether or not to participate in this study will not affect your current or future relations with Weber State University. SUBJECT’S CONSENT I will be given a copy of this informed consent document to keep for my records. I agree to take part in this study. In consideration of all of the above, I give my consent to participate in this research study. o Yes, I consent, and I agree that I have children and live in Utah. (1) o No (2) SPEECH LANGUAGE IMPAIRMENTS IN UTAH 72 Skip To: End of Block If IRB STUDY #AY20-21-177 WEBER STATE UNIVERSITY INFORMED CONSENT Communication Disorders in UtahYou... = No Q1 What is the age of your child in years and months? o Years (1) ________________________________________________ o Months (2) ________________________________________________ Q3 My child has a diagnosed speech/language impediment. o Yes (1) o No (2) Skip To: End of Block If My child has a diagnosed speech/language impediment. = Yes Q6 My child communicates similar to his same age peers. o Yes (1) o No (2) Q7 My child’s speech is ________ clearly understood by an adult unfamiliar with my child. o Always (1) o Often (2) o Sometimes (3) o Seldom (4) o Never (5) SPEECH LANGUAGE IMPAIRMENTS IN UTAH 73 Q8 My child’s speech is ________ clearly understood by other family members (siblings, grandparents, aunts, uncles). o Always (1) o Often (2) o Sometimes (3) o Seldom (4) o Never (5) o Not Applicable (6) Q9 My child’s speech is ________ clearly understood by me or another primary caregiver. o Always (1) o Often (2) o Sometimes (3) o Seldom (4) o Never (5) SPEECH LANGUAGE IMPAIRMENTS IN UTAH 74 Q10 My child’s speech is ________ clearly understood by their teachers. o Always (1) o Often (2) o Sometimes (3) o Seldom (4) o Never (5) o Not Applicable (6) Q11 My child’s speech is ________ clearly understood by friends and or classmates. o Always (1) o Often (2) o Sometimes (3) o Seldom (4) o Never (5) o Not Applicable (6) End of Block: Default Question Block Start of Block: Block 2 SPEECH LANGUAGE IMPAIRMENTS IN UTAH 75 Q13 My child _________ hesitates to speak, or is reserved or uncomfortable when speaking. o Always (1) o Often (2) o Sometimes (3) o Seldom (4) o Never (5) Q14 I ___________ have concerns about my child’s speech and communication. o Always (1) o Often (2) o Sometimes (3) o Seldom (4) o Never (5) Q15 Others (family members and people outside of our family) __________ express concerns regarding my child’s speech and communication. o Always (1) o Often (2) o Sometimes (3) o Seldom (4) o Never (5) SPEECH LANGUAGE IMPAIRMENTS IN UTAH 76 Q16 My child's teacher/care giver has expressed concerns about my child's communication. o Yes (1) o No (2) o Not sure (3) o My child has no other teacher/caregiver. (4) Q17 I have expressed concerns about my child’s speech to my pediatrician. o Yes (1) o No (2) o Not sure (3) o I do not have access to a pediatrician. (4) Q18 My child’s pediatrician has expressed concerns regarding my child’s speech. o Yes (1) o No (2) o Not sure (3) o I do not have access to a pediatrician. (4) Display This Question: If My child’s pediatrician has expressed concerns regarding my child’s speech. = Yes SPEECH LANGUAGE IMPAIRMENTS IN UTAH 77 Q37 If your pediatrician expressed concerns did they do any of the following? o My pediatrician then made a referral for speech services. (1) o My pediatrician told me not to worry and that my child would outgrow it. (2) o Other (please specify) (3) ________________________________________________ Q19 How confident are you in your knowledge of speech milestones? o Very confident (1) o Somewhat confident (2) o Not at all confident (3) Q20 Learning about speech milestones my child should reach, and having games and strategies to help my child communicate is something that would help our family. o Definitely (1) o Probably (2) o Maybe but I do not have time (3) o Not really (4) SPEECH LANGUAGE IMPAIRMENTS IN UTAH 78 Q21 Access to high quality preschool would _________ help my child’s communication. o Definitely (1) o Maybe (2) o Probably, but I cannot afford it. (3) o My child is in preschool but it is not helping their communication. (4) End of Block: Block 2 Start of Block: Block 3 Q22 Please tell me when your child was diagnosed. o My child was diagnosed before Kindergarten (1) o My child was not diagnosed until Kindergarten or later. Please specify age/grade level when diagnosed. (2) ________________________________________________ Q23 I had concerns about my child’s speech and communication before diagnosis o And was able to get a referral and start speech therapy right away (1) o And my pediatrician told me to wait until school began (2) o But did not have access to a pediatrician and was unsure what to do (3) o I did not have concerns (4) SPEECH LANGUAGE IMPAIRMENTS IN UTAH 79 Q24 My child was referred to speech services by ▢ Pediatrician (1) ▢ Preschool Teacher (2) ▢ Preschool Speech Language Pathologist (3) ▢ General Education K-12 Classroom Teacher (4) ▢ General Education K-12 Speech Language Pathologist (5) ▢ Other (please specify) (6) ________________________________________________ Q25 My child began speech services prior to Kindergarten and it is because (check all that apply): ▢ Pediatrician referred (1) ▢ Insurance paid for services (2) ▢ Preschool provided services (3) ▢ Services were available (4) ▢ Services were easily accessed (5) ▢ My child did not receive services until/after Kindergarten (6) SPEECH LANGUAGE IMPAIRMENTS IN UTAH 80 Q26 My child did not begin speech services until/after Kindergarten and it is because (check all that apply): ▢ There was no referral (1) ▢ I was unaware of speech issues (2) ▢ Insurance would not pay (3) ▢ Cost prohibitive (4) ▢ Lack of local services (5) ▢ Lack of transportation to services (6) ▢ Time commitment burden (7) ▢ Other (Please specify) (8) ________________________________________________ ▢ My child received services prior to Kindergarten (9) Q27 In a few short sentences please describe what helped you access speech services and what hindered access to services: ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ End of Block: Block 3 Start of Block: Block 4 SPEECH LANGUAGE IMPAIRMENTS IN UTAH 81 Q38 The following section asks demographic questions that will only be used for purposes related to this study. Q29 What is your gender? o Male (1) o Female (2) o Non-binary / third gender (3) o Prefer not to say (4) Q30 What is your age? ________________________________________________________________ Q31 What is the gender of your child? o Male (1) o Female (2) o Non-binary / third gender (3) o Prefer not to say (4) SPEECH LANGUAGE IMPAIRMENTS IN UTAH 82 Q32 Please specify your ethnicity: ▢ African American/Black (1) ▢ Asian American (2) ▢ Hispanic/Latino/Spanish (3) ▢ Caucasian (4) ▢ Native American (5) ▢ Pacific Islander (6) ▢ Other (please specify) (7) ________________________________________________ ▢ Prefer not to answer (8) SPEECH LANGUAGE IMPAIRMENTS IN UTAH 83 Q33 What is the level of education you have completed? o Less than high school (1) o High school graduate (2) o Trade school (3) o Some college (4) o 2 year degree (5) o 4 year degree (6) o Masters degree (7) o Professional degree (8) o Doctorate (9) SPEECH LANGUAGE IMPAIRMENTS IN UTAH 84 Q34 What is the income level of your household? o Less than $10,000 (1) o $10,000 - $19,999 (2) o $20,000 - $29,999 (3) o $30,000 - $39,999 (4) o $40,000 - $49,999 (5) o $50,000 - $59,999 (6) o $60,000 - $69,999 (7) o $70,000 - $79,999 (8) o $80,000 - $89,999 (9) o $90,000 - $99,999 (10) o $100,000 - $149,999 (11) o More than $150,000 (12) Q35 What is your relationship status? o Married (1) o Widowed (2) o Divorced (3) o Separated (4) o Never married (5) SPEECH LANGUAGE IMPAIRMENTS IN UTAH 85 Q36 What is your primary household language? ________________________________________________________________ End of Block: Block 4 Start of Block: Invitation to Focus Group Meeting. Q2 Would you like to participate in a follow up Focus Group? Select yes to sign up in a different survey. o Yes (1) o No (2) End of Block: Invitation to Focus Group Meeting. SPEECH LANGUAGE IMPAIRMENTS IN UTAH 86 Appendix C Survey Text Box Responses SPEECH LANGUAGE IMPAIRMENTS IN UTAH 87 Q24 - My child was referred to speech services by Myself because they told me to wait We took him to Weber Morgan early intervention where we had him tested Self referral. Pediatrician suggested we wait and see, after talking to my sister (SLP) we decided to seek out help School crossing guard Referred by me as a parent. 3rd kid needing speech I already saw the signs. Psychologist and Early Intervention No one referred him Nicu follow up Myself Myself Mom that’s a Slp Mom I sought out a pathologist I referred him for speech services myself I reached myself I believe another parent told me about Weber District Early Intervention and I called them myself. I am a K-12 teacher and knew my child needed services Friends Early intervention Early intervention Early intervention Early Intervention at age 2 Early Intervention Caseworker Audiologist And a family member who is a speech pathologist SPEECH LANGUAGE IMPAIRMENTS IN UTAH 88 Q26- My child did not begin speech services until/after Kindergarten and it is because I could never get hold of anyone We waited to see if it resolved by itself with age He didn’t met the threshold to qualify for speech before kindergarten. I paid for private speech services till I could get him qualified in school When we tried to enroll in Headstart, it was March or April and we were told it would be pointless to enroll for the few months left in their school year. So we had to wait for kinder. My pediatrician told he wasn't worried about his speech yet Applied multiple time. Never received call backs Preschool teacher mentioned it and it was being monitored I wanted to wait until Kindergarten to see if her speech would improve. Evaluated at 4 and did not qualify. Evaluated again in 1st grade and qualified for services. I knew he had a lisp, but never thought much about it and no teacher mentioned it to me. I don’t remember SPEECH LANGUAGE IMPAIRMENTS IN UTAH 89 Q27 - In a few short sentences please describe what helped you access speech services and what hindered access to services: In a few short sentences please describe what helped you access speech services and what hindered access to services: Services seemed to be impossible to get. My pediatrician said I could wait until kindergarten or I could call Early Intervention, and they gave me the contact info, but every time I tried to call I just got voicemails and no responses and went in circles for months. I never got anywhere until my son started kindergarten. Access in my sons school is excellent. At the advice of a speech pathologist we waited until he was 9. After contacting the school we were immediately referred for services. Being told that the school district had services. What hindered was the approval process. Finding a contact and information, then the process of forms and evaluations was difficult to access and time consuming. My son received early intervention speech therapy prior to kindergarten due to chemotherapy for cancer that affected his hearing and thus his speech. He was able to receive in home speech therapy from Davis county school district. He tested out prior to preschool and then in kindergarten we asked for an iep and he qualified due to his hearing loss and need for hearing aids. He was determined to have a speech impediment and needed speech services in school. These are provided now at the charter school he attends. We have been very fortunate. Early intervention testing recommended by a case worker who checks up on children who had nicu stays This su