Adult Autism Clinic

The UW Adult Autism Clinic operated by UW Medicine (UWMAAC) is designed to meet the complex needs of individuals over 18 years of age with autism spectrum and related disorders. Launched in 2012, UWMAAC has served thousands of adults and their families in accessing scarce adult medical and behavioral health resources while also providing opportunities for trainees to better understand the needs of autistic adults and adults with IDD. The providers at the Adult Autism Clinic assess the various needs of patients and families and customize care management approaches to assure the best possible patient experience. The clinic provides autism spectrum screening evaluations and behavioral medicine services, including medication management, mental health assessments, and adult transition services, all in an effort to maximize quality of life through the lifespan. In 2021, the clinic moved to the Center on Human Development and Disability (CHDD). This relocation allowed for more collaborative work with existing CHDD clinics, other UCEDD programs such as the Clinical Training Unit, growth in services such as social work and behavioral health, and opportunities for even more community outreach and healthcare provider training and education.

AIR-P Network

The Autism Intervention Research Network on Physical Health (AIR-P) is a research network funded through the Health Resources & Services Administration (HRSA) with a goal of improving the physical health and well-being of children and adolescents with Autism Spectrum Disorder (ASD) and other intellectual and developmental disabilities (IDD). AIR-P advances HRSA's goal of addressing disparities and improving health equity by focusing on individuals from underserved populations across the United States. As a multisite Learning Network, AIR-P provides a collaborative laboratory for developing and testing evidence-based interventions and accelerating the adoption of effective interventions to improve care and reduce disparities. The Research Network provides national leadership in research to advance the evidence base on effective interventions for autistic individuals and individuals with other IDDs, with a focus on addressing physical health and wellbeing across the lifespan. Dr. Gary Stobbe, Director of the UCEDD Adults and Elders Program here at the University of Washington, will guide the UW UCEDD as one of 15 "collaborating research entities" (CRE) across the US. Through this network, local junior researchers will receive guidance through all steps of a research project, from inception of an idea to publication of findings, as well as access critical pilot funding for some selected projects.

Autism Coalition of Tacoma

The mission of the Autism Coalition of Tacoma (ACT) is to enrich the lives of all individuals and their families in the South Puget Sound impacted by autism and related developmental disabilities. ACT was formed in 2017 as a result of the Simon Family Endowment. The goal of the Simon Family Endowment is to help build, connect and enhance programs and services supporting adults diagnosed with autism spectrum disorder (ASD) and other intellectual disabilities. ACT is a collaboration of the major institutions in the South Sound currently supporting individuals and families impacted by autism. Members of the ACT Professional Advisory Committee were appointed based on their expertise in the field of autism and their knowledge of the South Sound.

Caregiver Perceptions, Use Patterns, and Developmental Outcomes of Two Powered Mobility Devices

The use of powered mobility devices for young children with cerebral palsy (CP) has been gaining traction, with evidence that the use of powered mobility at young ages complements other interventions focused on more traditional mobility skills such as crawling and walking. This study will collect preliminary data to investigate device use patterns, caregiver perceptions, and developmental outcomes of children with CP as families are introduced to two early powered mobility interventions: the Permobil Explorer Mini, and a modified ride-on toy car.

Specific Aims include:

• Aim 1: Evaluate a powered mobility intervention to understand developmental, activity and participation outcomes of young children with CP.
• Aim 2: Compare the use patterns (frequency, duration, environment) and acceptability, feasibility, and intervention appropriateness of two powered mobility options: The Explorer Mini and a modified ride-on car.

Early Powered Mobility for Toddlers with Cerebral Palsy: A Comparative Case Series of the Permobil Explorer Mini and a Modified Ride-On Car

Children diagnosed with Cerebral Palsy (CP), or children being monitored for signs and symptoms related to CP, make up the largest group of children affected by a disability. Across the lifespan, many people with CP use powered mobility devices such as scooters and wheelchairs to support their mobility and participation in home and community settings. However, the trend in early intervention has been to delay use of devices until efforts to promote independent walking are exhausted, despite strong evidence that supports early use of powered mobility to assist with participation in everyday activities. Additionally, research has indicated the use of powered mobility complements (rather than detracts from) other interventions focused on more traditional self-initiated mobility skills such as crawling and walking.

Study investigators have been involved in an international mobility and socialization program called Go Baby Go, which provides safety and accessibility modifications to commercially available toy ride-on cars. In compliment to this work, their colleagues at Permobil have designed and recently received FDA clearance for the Explorer Mini, a powered mobility device specifically designed for children 12-36 months with disabilities such as CP to enhance their mobility and environmental exploration. Both these early powered mobility options offer functional, aesthetic, and affordable alternatives for children and families to fill a gap left by traditional powered wheelchairs.

This clinical trial will investigate the device use patterns, caregiver perceptions, and developmental outcomes of children with CP and their families. This represents the first opportunity to compare the novel device (Explorer mini) with a modified ride-on car. Taken together, research comparing these devices in natural environments can add critical data to the evidence base supporting early powered mobility for children with CP as a part of using multiple devices for mobility to care for those with disabilities across the lifespan. This study will also create a pilot data set from which to secure future large-scale funding to assess a wider variety of mobility devices with multiple trial sites across the country. Establishing and improving this evidence base for children with CP and their families is essential to ensure equitable access to mobility and participation experiences across the lifespan using a range of technologies to support access and facilitate achievement of key developmental skills. The aims are to: 1) Evaluate a powered mobility intervention to promote developmental, activity and participation outcomes of young children with CP; and 2) Compare the use patterns (frequency, duration, environment) of two powered mobility options: The Explorer Mini and a modified ride-on car.

Go Baby Go

Go Baby Go (GBG) is a community-based outreach program that works with families, clinicians and industry partners to provide pediatric mobility equipment to children with disabilities. The primary mission of GBG is to provide modified ride-on cars to these children to use as a powered mobility device for fun, function, and exploration. GBG was founded by Dr. Cole Galloway, PT, PhD at the University of Delaware. Shawn Israel, PT, DPT and Heather Feldner, PT, PhD, PCS became co-directors of Go Baby Go Seattle in 2016, which officially became UW Go Baby Go in 2020. Mobility in children is more than just about getting from one place to the next; it is also about exploring the world in a way that allows for independence and healthy brain development. These modified ride-on cars are important because they give children control over their mobility which research has shown leads to developmental gains in motor skills, cognition, language, and social skills.Through playgroups, community events, and workshops GBG provides opportunities for families to build relationships and for children to socialize with their peers. GBG aims to provide all Go Baby Go cars to families at no cost, through sponsorship of workshops and individual and corporate donations.

International Society on Early Intervention

The primary purpose of International Society on Early Intervention (ISEI) is to provide a framework and forum for professionals from around the world to communicate about advances in the field of early intervention. Instituted and maintained at our UCEDD, the membership of ISEI is composed of basic and clinical researchers relevant to the field of early intervention representing a diverse array of disciplines, as well as clinicians and policy-makers in leadership positions. Linkages between basic science and applied research, interdisciplinary collaborations, and connections between research and practice are emphasized. ISEI activities include major interventional conferences every three years, collaborations with international partners, and dissemination of by early intervention articles published our collaborator journal, Infants and Young Children. ISEI maintains a directory to facilitate communication among its over 3,000 members representing more than 100 countries.

Understanding Movement and Learning in Children Introduced to Powered Mobility

Use of powered mobility devices for young children with developmental disabilities may increase individual functional mobility, communication, and social engagement. In this study, researchers quantify how young children interact with powered mobility devices and measure how using such devices impacts their movement, language, and development. This study aims to meet four objectives:

• Objective 1: Quantify how children navigate their environments and interact with the device (e.g., joystick, steering wheel) while using a powered mobility device.
• Objective 2: Measure how children move their bodies (e.g., body positioning, muscle activation) while using a powered mobility device.
• Objective 3: Evaluate how language skills (e.g., social communication, self-produced vocalizations) change when children use a powered mobility device.
• Objective 4: Evaluate how development (e.g., cognition, fine and gross motor skills, expressive and receptive vocabulary) changes when children use a powered mobility device.

Up and Down: Mobility and Exploration for Infants with Down Syndrome using a Portable Partial Body Weight Support Harness System

Children with Down syndrome (DS) experience delayed mobility, which decreases their opportunity for exploration and impacts the development of their cognitive, communication, and social-emotional skills. Physical therapy interventions for infants with DS frequently focus on the development of postural control and body weight support to enhance the development of motor skills. Partial body weight supported (PWBS) intervention, where part of the individual body weight is offloaded through the use of a harness and allows for easier movement through space, is an effective intervention for infants with DS, leading to earlier onset of independent mobility and increased physical activity. Researchers are combining PWBS support for infants with DS who are not yet walking, within an enriched play environment to better understand how PWBS may impact their mobility, exploration, and overall activity level.

ACCESS for Aging Well

The Georgia Institute of Technology's (Georgia Tech) Center for Inclusive Design and Innovation (CIDI), in collaboration with the University of Washington's Center for Technology & Disability Studies (CTDS), develop the Accommodation Expert Support System for Aging Well (ACCESS for Aging Well), a dynamic accommodation system with web-based and mobile functionality that help older adults with disabilities and their formal and informal caregivers and service providers work together to identify accommodations that allow older adults with disabilities to continue to live in their community of choice. ACCESS for Aging Well uses intelligent algorithms to prioritize recommendations within a person-centered service framework. These algorithms is be based on existing data from project partners, collected data from use of the system, and review of state-of-the-science evidence in the scientific literature and practitioner input. This project builds upon several current proof of concept development projects at CIDI and continue through the Proof of Product and Proof of Adoption stages of development.

ADA Network - Knowledge Translation Center

The purpose of the ADA Knowledge Translation Center (ADAKTC) is to ensure that information and products developed and identified through the 10 regional centers of the ADA National Network (ADANN) are of high quality, based on the best available research evidence, and are deployed effectively to multiple key stakeholders. The ADAKTC facilitates coordination, organization, and collaboration among the ADANN centers and generates new knowledge about optimal methods to enhance stakeholder's use of knowledge about their rights and responsibilities under the ADA. Stakeholders include: employers, researchers, educators, policy makers, staff of state and local government agencies, individuals with disabilities, family members, and project staff in the ADA regional centers and other related federal and privately-funded organizations.

To achieve this purpose the ADA Network - KTC will:

1. Optimize the efficiency and impact of the ADA National Network's training, technical assistance, and information dissemination.
2. Increase the awareness and use of available ADA-related research findings to inform behavior, practices, or policies that improve equal access in society for individuals with disabilities.
3. Increase awareness and utilization of ADA-related research findings by appropriate ADA stakeholder groups.
4. Improve understanding of ADA stakeholders' need for and receipt of ADA Network Services over time, including services to address emerging issues related to compliance with ADA requirements.

Independent Living for the Blind Program for Department of Services for the Blind

The Center for Technology and Disability Studies (CTDS) provides technical assistance, policy analysis, and program implementation to the Washington State Department of Services for the Blind(DSB), primarily related to its Independent Living for the Blind Program (IL). IL empowers individuals with vision loss to live independently in their homes and communities. CTDS staff members develop and manage subcontracts with a statewide network of community providers who provide the skills, the tools, and the confidence individuals with recent vision loss need to thrive. In support of the IL program, CTDS staff provide technical assistance regarding IL best practices, develop and implement an online case management system, and compile federal and state reports on DSB's behalf.

Traumatic Brain Injury in Corrections

This project aims to improve interactions between incarcerated individuals with Traumatic Brain Injury (TBI) and front line staff of the Washington State Department of Corrections (DOC). Specifically, the project aims to help front line staff understand what a TBI is, how offenders might be affected by TBI, what they could do that would help in day-to-day management of problems faced by offenders with TBI, how TBI might affect engagement in treatment programs, how TBI affects compliance with DOC rules and regulations, and how TBI might affect transition from corrections to community living. The project proposes to effect change at two levels in the DOC. The first is to increase awareness and knowledge about TBI system-wide. The second is to develop and pilot intensive knowledge translation activities with front line staff who work with specific target populations (e.g., veterans, or women, or individuals with developmental disabilities) in order to translate knowledge into practice. These activities will be evaluated and used to develop best practices that can be generalized to other correctional facilities within the DOC.

University of Washington Employment Program

The UW Employment Program works to support competitive employment for people with intellectual and developmental disabilities. In order to accomplish this mission, UWEP staff address three major goals: 1) To develop and implement new or expanded programs relating to employment of persons with disabilities; 2) To provide outreach and marketing of all program services to the community; and 3) To provide direct service to clients with ID and DD.

UWEP staff members serve and advocate for adolescents and adults with ID and DD. They also provide direct services to clients and work to ensure successful and equitable employment through working with employers, parents, agencies, and other support personnel. Direct services include job development, job placement, job training, and continued employment support. All employment is in integrated settings.

UWEP collaborates with numerous agencies to provide employment services to individuals with developmental disabilities. UWEP works with the Division of Vocational Rehabilitation, King County Division of Developmental Disabilities, and is a member of the Seattle Chamber of Commerce.

Other activities include assessment and career exploration services for adolescents with disabilities that help clients acquire the social skills necessary to participate in employment, identify potential career options, and to obtain real life, paid employment experience.

Washington Assistive Technology Act Program

The mission of Washington Assistive Technology Act Program (WATAP) is to provide a comprehensive continuum of services and resources to help Washingtonians with disabilities of all ages to make informed decisions about assistive technology (AT), and to provide alternative means of acquiring the AT they need. WATAP serves not only individuals with disabilities, but also their circle of support including family members, employers, employment service providers, educators, health care providers, social service providers, and others seeking AT expertise in all areas of life, but especially in education, employment, and community living. WATAP is part of the Center for Technology and Disability Studies (CTDS) and is guided by a consumer-majority advisory council. WATAP provides hands-on demonstrations and short-term loans of assistive technology devices to help potential users make informed decisions about using such devices and related services. Additional services offered include information and referral, training, and technical assistance.

WATAP, Timberland Regional Library Systems, and the San Juan Island Library have partnered to offer to library members the opportunity to see and try a small selection of assistive devices to help with a variety of daily tasks. Members of the Library Systems may borrow any of the devices through the Library System catalog. Several State Agencies, including the Special Education Technology Center, the Division of Vocational Rehabilitation (DVR), Department of Services for the Blind (DSB), and Aging and Long-term Support Administration (ALTSA) coordinate with WATAP's Device Borrowing program to provide short-term loans of assistive technology to special education teachers, speech-language pathologists, rehabilitation counselors, occupational/ physical therapists, case managers, homecare support personnel, and other technology specialists throughout Washington State.

WATAP partners with the Northwest Access Fund to provide low-interest financial loans for the purchase of assistive technology devices and services through the Assistive Technology Loan and matched savings program (Individualized development Accounts or IDAs). WATAP provides support to local community reuse providers, Bridge Disabilities Ministries Meyer Mobility Center and the Seattle Hearing, Speech, and Deafness Center (HSDC), for the purposes of expanding capacity for their device reuse programs. The Meyer Mobility Center provides reused nobility and durable medical equipment at no cost and HSDC offers a unique hearing aid reuse program. WATAP coordinates the Evergreen Reuse Coalition, a Washington State reuse network, which seeks to make a positive impact to the environment, quality of life of consumers, and cost savings to consumers through effective reuse of assistive devices. Through partnership with the Perkins School for the Blind, WATAP provides telecommunications equipment and associated support and training to eligible applicants who have vision and hearing impairments through iCanConnect WA, Washington's National Blind Equipment Distribution Program funded by the Federal Communication Commission.The mission of Washington Assistive Technology Act Program (WATAP) is to provide a comprehensive continuum of services and resources to help Washingtonians with disabilities of all ages to make informed decisions about assistive technology (AT), and to provide alternative means of acquiring the AT they need. WATAP serves not only individuals with disabilities, but also their circle of support including family members, employers, employment service providers, educators, health care providers, social service providers, and others seeking AT expertise in all areas of life, but especially in education, employment, and community living. WATAP is part of the Center for Technology and Disability Studies (CTDS) and is guided by a consumer-majority advisory council. WATAP provides hands-on demonstrations and short-term loans of assistive technology devices to help potential users make informed decisions about using such devices and related services. Additional services offered include information and referral, training, and technical assistance.

Assuring Pediatric Nutrition Care in the Community

Assuring Pediatric Nutrition in the Hospital and Community, an intensive training program, is offered once a year to community-based registered dietitians (RDs). Other health care professionals with an interest in pediatric nutrition are also invited to attend. The training prepares RDs to screen children for nutrition problems, assess specific nutritional needs, and develop interventions for children with special health care needs.

RDs can earn up to 26 hours of continuing education credits from the Commission on Dietetic Registration for participating in the training. During the four-day intensive training program, 20 speakers cover an array of nutrition and feeding issues faced by children with special health care needs. Speakers from the University of Washington and Seattle Children's Hospital represent a variety of disciplines. The class is limited to 40 participants to facilitate interaction and small group learning experiences and to promote development of clinical competencies. The conference was expanded in 2016, to provide training opportunities at an advanced level. Participants can select from a 3-day introduction to pediatric nutrition or a 2-day advanced topic option.

Cardiac Neurodevelopmental Clinic

Children who are born with complex congenital heart disease (CHD) are at risk for problems with the growth and development of their brain and central nervous system. The Cardiac Neurodevelopmental Clinic evaluates and treats babies and children with complex congenital heart defects who had heart surgery before their first birthday. Clinicians provide close follow-up during their first 5 years of life and offer intermittent follow-up and consultation for children age 5-18 years. A visit to the Cardiac Neurodevelopmental Clinic can provide reassurance that a child's brain and central nervous system are developing normally. Clinical disciplines available in the clinic include: developmental behavioral pediatrics, psychology, physical therapy, occupational therapy, speech therapy, social work, nutrition, and audiology. Clinic staff members work in interdisciplinary teams, combining expertise to evaluate each child and make recommendations for care. If clinicians find developmental issues, they can help connect families with the therapies that make a difference.

Child Development Clinic

The Child Development Clinic provides diagnosis, assessment and management plans for children from early childhood to adolescence with or at risk for neurodevelopmental disabilities. Clinic staff members work in interdisciplinary teams, combining expertise to evaluate each child and make recommendations for care. Staff members include professionals from audiology, developmental/behavioral pediatrics, nursing, nutrition, occupational therapy, physical therapy, psychology, social work, and speech and language pathology. The clinic is the primary venue for interdisciplinary clinical training under the auspices of the Leadership Education in Neurodevelopmental Disabilities training grant awarded by the Maternal and Child Health Bureau using Combating Autism Act funds. Trainees participate in hands-on and didactic training which includes assessments, parent conferences, lectures, and report writing.

Clients are diagnosed with an array of developmental disabilities including intellectual disability, autism spectrum disorders, motor disabilities, learning disabilities, behavioral disorders, communication disorders, and attention-deficit hyperactivity disorder.

Child Health Notes

The Child Health Notes (CHN) project provides health care providers in the community with a series of newsletters that contain current information on the early identification and management of special health and developmental concerns of infants, children and youth. The goal of the CHN project is to support community-based medical homes for children by facilitating partnerships among primary care providers, families, community early intervention providers and specialists. A medical home is a team approach to providing comprehensive primary health care services in a high-quality and cost-effective manner.

The CHN newsletters are developed for physicians, nurse practitioners, physician assistants, public health nurses, family resource coordinators, early intervention providers, childcare providers, and other community providers who participate in medical homes. Each newsletter includes information on a health or development topic, management suggestions for primary care practices, and local, state and national resources for professionals and families. The CHNs are customized and distributed electronically or in print by county medical home leadership network resource teams, local health jurisdictions, health plans or other health programs. Customized health notes include additional key resources and information for primary health care providers within their local area.

Community Asset Mapping

The Community Asset Mapping (CAM) project is a collaboration between local communities and Washington State Maternal and Child Health Title V partners. These partners include the University of Washington Leadership Education in Neurodevelopmental and Related Disabilities (LEND), the Washington State Department of Health, and the Washington State Medical Home Partnerships Project (MHPP). CAM staff and a network of state partners help communities strengthen local systems to screen, evaluate, diagnose and provide timely intervention services to children with autism and other developmental disabilities. CAM is a process and forum for communities to identify issues around serving all children, but especially children with special healthcare needs and their families. This is done through a community-driven process of identifying assets and challenges in how children are currently being identified and served, prioritizing opportunities to improve care, and moving forward as a community to pilot and implement improvements. CAM staff help communities identify and address training needs, as well as examine how to improve communication and referrals to state diagnostic centers for more complicated evaluations.

The CAM project was developed by the state Washington Autism Advisory Council in 2009 and has benefited greatly from the active support of council participants. Since 2009, twelve rural Washington State communities have had facilitated community discussions and continue to work on these issues locally. The CAM process has proven to be a successful tool for igniting community coalitions and improving services for children with special health care needs, specifically children with autism and their families.

Community Feeding Teams of WA

CHDD faculty provides ongoing training and technical assistance to feeding teams across the state of Washington to ensure they are able to meet the needs of their communities. Twenty-five community-based feeding teams have been established to meet the needs of children with special health care needs, including rural and underserved areas of the state. These teams serve their communities by assessing, prioritizing and addressing feeding and nutritional issues of children and infants. Feeding teams are composed of interdisciplinary health care professionals to ensure services are family centered, comprehensive and cost-effective. The team approach benefits families and caregivers by allowing all issues of nutrition and feeding to be addressed by one local, coordinated team, thus avoiding duplication of services. The teams are based in community facilities across the state such as health departments, developmental centers, school and educational service districts, and hospitals. Team members include registered dietitian nutritionists, occupational therapists, speech therapists, physical therapists, public health nurses, school nurses, physicians, social workers, feeding behavior therapists and others.

CHDD faculty conduct an annual one-day continuing education training that covers topics of interest identified by feeding team members. This annual training provides an opportunity for team members to share experiences and build networks. Technical assistance is also provided by CHDD faculty throughout the year to address current feeding team concerns and needs and, to provide guidance for new feeding team development. This project is part of a collaborative effort between the Children with Special Health Care Needs Program at the Washington State Department of Health and the UCEDD.

Community-Based Clinics

Several clinics in the region, including Yakima Children's Village, Northwest Autism Center in Spokane, Boyer Children's Clinic, etc., provide services to children and adults with special needs; UCEDD faculty and trainees in professions relevant to developmental disabilities participate in a variety of ways in these specialized clinics, as described below.

Yakima Children's Village: located in central WA and supports over 30 different specialized services for families living in Yakima County, with a high percentage of rural and native Spanish speaking population. Children's Village has medical specialty clinics that provide developmental evaluations and diagnostic services, dental services, occupational, physical and speech therapy, mental health counseling, education services, behavioral intervention and nurse home visiting services to thousands of children annually.

Northwest Autism Center in Spokane: located in less populated eastern WA and serves families in Spokane County. Northwest Autism Center facilitates and coordinates comprehensive services for individuals with autism spectrum disorder and other developmental disabilities through the lifespan, using community-based approaches.

Boyer Children's Clinic, a community-based clinic, is a non-profit therapy and early childhood educational facility serving children from birth to three years of age who have neuromuscular disorders such as cerebral palsy or delays in development. The mission of Boyer Children's Clinic is to improve the quality of life of children with neuromuscular disorders or other developmental delays by providing the best solutions for each child and family. To achieve this mission, a multi-disciplinary team, including a developmental pediatrician, a nurse, speech pathologists, occupational and physical therapists, educators, family resource coordinators and a social worker, provides services. The team works closely with the family to conduct initial diagnostic assessments and plan and implement individual programs. Boyer Children's Clinic is one of the CTU clinical sites for our pediatric fellows and residents.

Holly Ridge Development Center is a non-profit agency that provides services for children and adults with special needs. Holly Ridge Center is an outpatient center for children up to age three with a range of developmental disabilities. Located in Bremerton, WA, Holly Ridge serves clients in Kitsap County and portions of adjacent counties that are often underserved by medical specialists and far from urban tertiary centers.

The Kindering Center, a not-for-profit neurodevelopmental center, has been providing comprehensive services for children with special needs and their families since 1962. Each year thousands of infants and children receive crucial therapies, special education, and counseling. The Clinical Training Unit (CTU) of the UCEDD provides Nutrition consultation services, including chart review, evaluations, and collaboration in the development and monitoring of interventions.

Seattle Children's Autism Center (SCAC) is a multidisciplinary clinic offering medical and mental health services to provide assessment, diagnosis, treatment and support to infants to young adulthood with ASD and their families. CHDD faculty provide patient care and facilitate clinical training for LEND fellows at SCAC. Other centers are Alyssa Burnett Adult Life Center that offers lifelong learning for people 18 & older with ASD/DD. Echo Glen Children's Center is a medium/maximum security facility providing treatment services for younger male offenders and the only institution for female offenders. Consultation with psychologists regarding neurodevelopmental disabilities is provided.

CSHCN Medical Home Partnerships for Children and Their Families

A 'medical home' is primary health care that is team-based, holistic, and centered on the patient and family. This project is funded by the Washington Department of Health (DOH) Children and Youth with Special Health Care Needs (CYSHCN) program. The Medical Home Partnerships Project helps WA Title V Program to meet their federal performance measures to improve access to medical homes, increase the percentage of children who receive early developmental and other screenings, and improve systems of care for CYSHCN, including patient/family-provider partnership.

1. Provide technical assistance and support to 27+ county or clinic-based Medical Home teams, Community Asset Mapping coalitions, or county-based interdisciplinary autism diagnostic teams or networks improving care for CYSHCN across Washington. Pediatric clinics focus on improving overall 'medical homeness,' care coordination, and developmental screening and referral for children whose families do not have English as a main language. The CAM coalitions bring together community providers from primary care, schools, behavioral health, early intervention, family support to collectively improve early identification and evaluation of children with autism and/or other developmental disabilities. Autism Diagnostic teams and networks organize around how to build community capacity to diagnose more children closer to home and avoid the long wait lists at tertiary care centers.
2. Provide leadership and consultation on state Universal Developmental Screening initiatives, including, Help Me Grow Washington, Central Washington Help Me Grow, Essentials for Childhood, and WA Frontiers of Innovation. These efforts are working to: a) identify and mitigate social determinants of health, b) increase parental and community awareness of optimal ways to support and nurture children in the prenatal period and first years of life, c) build on local developmental screening efforts in both health care and early childhood settings ensure all children are screened, d) address gaps in and link families to services that improve community provision of needed resources, and f) address policies at the local and state level that impact these efforts.
3. Research and write Child Health Notes (CHN), a quarterly one-page newsletter for pediatric primary care providers and others caring for children with special needs. Local communities adapt the newsletter resources section to include contact information for key local resources.
4. Provide trainings to Pediatric residents, LEND Fellows, public health students, nutritionists, dentists, and parents of CYSHCN on serving children through the medical home model and how to access key community resources.
5. Disseminate information on how the Medical Home Neighborhood (primary care, families, and community partners) can support children, their families and providers in Washington State through the project website medicalhome.org as well as through the project listserv with 300 subscribers.
6. Provide technical assistance to Department of Health led initiatives including the Collaborative Improvement and Innovation Network (CoIIN) to Advance Care for Children with Medical Complexity, the Washington Statewide Family Leadership (WSLI) Coalition for family-led organizations supporting families who have children and youth with special health care needs, and the WSLI Family Navigation Workgroup.

CSHCN Nutrition Network

The Children with Special Health Care Needs (CSHCN) Nutrition Network project is designed to improve the availability of quality, community-based nutrition services for children with special health care needs in Washington State. This objective is achieved through providing ongoing training opportunities and resources to over 200 registered dietitian nutritionists (RDNs) in Washington State who provide nutrition services to children with special health care needs. The CSHCN Nutrition Network strengthens the capacity of RDNs to effectively respond to the nutrition needs of families and children with special health care needs.

The CSHCN Nutrition Network activities include an annual one-day workshop reaching 75 network members (RDNs) for continuing education and information exchange, an annual 2.5 hour webinar for continuing education, and opportunities to participate in other webinars designed for the pediatric focused RDN.  Membership in the Nutrition Network begins with an initial two-day training; to increase workforce capacity yearly trainings are provided.  Network members come from a variety of employment settings including local health departments, community clinics, hospitals, early intervention centers and home health agencies. New members are selected based on pre-defined community needs and demographics. Learn More at: http://depts.washington.edu/cshcnnut/

Developmental-Behavioral Pediatrics Training Programs

Developmental-Behavioral Pediatrics Training Programs provide interdisciplinary custom-tailored training experiences for pediatric residents and medical students from the University of Washington and for Developmental Behavioral Pediatrics fellows from Seattle Children's Hospital as well as from the military fellowship program at Madigan Army Medical Center. Trainees participate in a variety of clinical and didactic activities both within CHDD and at community-based clinics to gain skills in evaluating the range of neurological development and behavior in the context of psychosocial influences. Combining developmental and behavioral aspects into the interdisciplinary training approach prepares trainees to integrate both influences as part of their customary surveillance and care.

Developmental Behavioral Pediatrics Fellows spend 3-6 months in Child Development Clinic, where they participate in the pediatric evaluation as well as the interdisciplinary team conference and parent conference. They are also LEND trainees and have the opportunity to present their research at the end of their second year, either as a poster or an oral presentation. One of the current Seattle Children's Hospital fellows is doing her fellowship research project in PKU Clinic at the CHDD. Pediatric residents spend one month of their three-year training program dedicated to Developmental-Behavioral Pediatrics. Each trainee participates in a custom-tailored experience that emphasizes interdisciplinary participation. In addition, trainees explore family-centered care in a medical home model that serves as a foundation for general pediatrics management. Pediatric residents spend time in Child Development Clinic as well as the Infant Development Follow-up Clinic. Fourth-year medical students at the University of Washington School of Medicine may opt for two-week or four-week elective rotations in Developmental-Behavioral Pediatrics. Each trainee participates in a custom-tailored experience that emphasizes interdisciplinary participation and medical home family-centered care.

Down Syndrome Specialty Clinic

The Down Syndrome Specialty Clinic was founded in 2016 with the goal to provide long-term developmental and behavioral consults and care for individuals with Down syndrome and their families. Clinicians focus on providing formal developmental assessments, consultation for behavioral concerns, and assessment for common medical problems that can contribute to behavior or development concerns. They also collaborate with schools and early intervention programs to help provide the best environment for success. In addition, clinicians can assess for the co-existence of other diagnoses such as ADHD or Autism Spectrum Disorder. The specialists available in our clinic include: developmental behavioral pediatrics, psychology, physical therapy, occupational therapy, speech therapy, social work, nutrition, genetic counseling, and audiology. Clinic staff members work in interdisciplinary teams, combining expertise to evaluate each child and make recommendations for care.

Families as Mentors

The Families as Mentors (FAM) Program enhances the trainee's understanding of the family experience of raising a child with a neurodevelopmental disability. Typically trainees learn directly from families through extended interactions and experiences that take place in the family's home and community.

Trainee learning objectives include:
1. To view families as teachers
2. To appreciate the realities of raising a child with a disability;
3. To develop leadership skills in promoting systems change among professional peers regarding family-centered care
4. To recognize that services or recommendations that may appear to be critically important from a professional perspective may decrease in importance when viewed within the context of the family's daily routines
5. To recognize and acknowledge biases, beliefs, and attitudes and how these may affect the client/family-clinician relationship. Discussion sessions are also held with fellows and faculty mentors to share and reflect on the FAM Program experiences and discuss readings.

FAS Diagnostic and Prevention Network

The Washington State Fetal Alcohol Syndrome Diagnostic & Prevention Network (FAS DPN) is a network of one Washington State community-based clinic and the core clinical/research/training FAS DPN clinic at CHDD. The core clinic at the CHDD was first established in 1993 through support from the Centers for Disease Control. The single clinic was expanded into the statewide FAS DPN clinical network in 1995 through legislation.

The goals of the FAS DPN are primary and secondary prevention of FASD through screening, diagnosis, research, and training. The network seeks to:

1. demonstrate the value of interdisciplinary diagnostic clinics that accurately identify FASD in persons of all ages,
2. provide comprehensive treatment planning (medical, mental health, educational/vocational, and social service) to reduce secondary disabilities, and
3. locate and intervene with the birth mothers of these individuals to prevent recurrent births of affected children.

An additional goal is to disseminate this approach to other communities and train and support those local efforts to develop similar programs. The FAS DPN holds clinics at the CHDD and across the state of Washington. Each clinic in the network uses the same interdisciplinary approach and systematic diagnostic method, the 4-Digit Diagnostic Code and FAS facial recognition software developed by FAS DPN faculty. The FAS DPN began diagnosing patients in 1993 and has diagnosed over 3200 patients to date. The FAS DPN has expanded both nationally and internationally through the training of interdisciplinary teams. CHDD faculty members have trained over 225 interdisciplinary teams worldwide.

Other network activities include training UW students, interns, fellows and community professionals; offering an online course to instruct professionals on the use of the FASD 4-Digit Diagnostic Code; distributing FAS Facial Photographic Analysis software and downloadable diagnostic guides; and creating one of the largest clinical/research databases that it uses to conduct studies to improve the diagnosis and intervention strategies used for individuals with FASD. The FAS DPN is also providing annual reports describing demand for services to stakeholders including the Department of Health, the Department of Social and Health Services, the Department of Corrections, and the Office of the Superintendent of Public Instruction.

The FAS DPN co-chairs the Washington State Fetal Alcohol Spectrum Disorders Interagency Work Group (FASD IAWG) established in 1995 through legislation. The mission of the FASD IAWG is to ensure coordination of State programs/institutions (UW, DOH, DSHS, OSPI, and DOC) for individuals with FASD and women at risk of having children with fetal alcohol exposure. The FASD IAWG reports periodically to the Governor's Council on Substance Abuse and key legislative committees to promote public policy for FASD prevention. These reports are posted on the Washington State FASD website (fasdwa.org) created and maintained by the FAS DPN.

First Steps Curriculum Project

The First Steps Program Curriculum is a set of self-study modules created by CHDD nutrition faculty for Registered Dietitians (RDs) working in the First Steps program for the Department of Health. The curriculum consists of a set of nine self-study modules which have recently undergone extensive updating. Module topics cover clinical skill-building and the role of the RD in the First Steps program; performing the nutrition assessment; nutrition for normal pregnancy, postpartum and breastfeeding; nutrition for the young infant; and nutrition therapy for specific conditions of pregnant women and infants.

Each online module takes from 30 to 60 minutes to complete and includes a quiz on the content. RDs who achieve a score of at least 80% receive continuing education credit with a certificate which can be downloaded and printed. Each module provides a list of resources on the specific module topic, including links to relevant websites.

Infant Development Follow-up Clinic

The Infant Development Follow-Up (IDFC) clinic was established in 1977 to provide developmental follow-up of children from 3 months to 5 years of age have developmental risk factors due to prematurity (born at 32 weeks gestation or earlier), low birth weight (under 1500 grams or 3 pounds 5 ounces) or prenatal exposure to drugs. The goal of the clinic is to provide early identification and referral for early intervention for the neurodevelopmental and neurobehavioral problems associated with prematurity, drug exposure and other biomedical and environmental risk factors. Each year about 350 clients visit the IDFC to receive diagnostic and treatment services. The majority are referred to CHDD by the University of Washington Medical Center. The clinic also conducts long-term follow-up clinical research concerning neonatal outcomes, complications, and treatment results.

The IDFC provides an ideal setting for interdisciplinary training. Approximately 25 trainees representing the disciplines of developmental pediatrics, psychology, audiology, nutrition, occupational therapy, and physical therapy participate in training each year. Continuing education presentations regarding the outcomes of low birth weight infants are delivered to local, state, and national audiences variously comprised of health care professionals, early interventionists, special educators, parents, and interdisciplinary trainees.

Late and Moderate Preterm Babies (LAMBs) Follow-up Clinic

The Late and Moderate Preterm Babies (LAMBs) Follow-up Clinic at the CHDD works with children who were born between 32 weeks to 36 weeks and 6 days gestation, or 4 to 8 weeks early. We provide developmental assessment and ongoing monitoring. Knowing that these children are at higher risk for developmental differences, our goal is to catch any problems early to help the child grow, learn, and thrive to their highest potential. A LAMBs clinic evaluation includes:

• A comprehensive medical history, neuromotor exam, and a Level 2 norm-referenced screening and assessment tool (The Capute Scales Cognitive Adaptive Test (CAT) Clinical Linguistic & Auditory Milestone Scale (CLAMS)).
• A detailed report on findings with recommendations for services, medical evaluations, laboratory studies, or imaging if pertinent which is sent to the primary care provider.
• Patients will also receive an audiology evaluation at 1 year-old, autism screening at 1 and 2 years-old, and oral health screening at 1 year-old.
• LAMBs clinic patients typically see a developmental pediatric nurse practitioner. The child will also see a pediatric registered dietician or pediatric audiologist depending on the child's age. Pediatric physical therapists, pediatric occupational therapists, developmental pediatricians, social work, and psychologists are also available for on-site consultations.

LEND: Excellence in Comprehensive Interdisciplinary Leadership Education

LEND (Leadership Education in Neurodevelopmental and Related Disabilities) is a graduate level, interdisciplinary training program which prepares health professionals for leadership roles in providing health care for individuals with neurodevelopmental disabilities and their families. The LEND program at CHDD is one of 52 LEND programs in the United States federally funded through the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act, and administered by the Maternal and Child Health Bureau under the Workforce Development Division.

The purpose of LEND is to provide training for health professionals who will assume leadership roles across the nation. These leaders assure the continued development of a comprehensive system that serves the needs of children and youth with neurodevelopmental disabilities, including autism spectrum disorders and other special health care needs. Program faculty participate in clinical research and policy development and partner with community programs to better serve the needs of these individuals and their families.

The LEND interdisciplinary training program enrolls health care professionals who have completed entry level training in their discipline. This includes postdoctoral fellows who have completed professional training and graduate students who are enrolled in academic programs at the University of Washington and other institutions in Washington State. Trainees complete clinical and didactic components to meet the requirements of our LEND program. Established community professionals also enroll in LEND to deepen their training in neurodevelopmental disabilities.

Long-term fellows engage in at least 300 hours of interdisciplinary training framed by an individual interdisciplinary leadership plan. The plan includes a leadership project, clinical experiences, public policy experience and a didactic program of core seminars intended to establish knowledge and skills based on individual needs and core training competencies. Long-term fellows present their projects at an annual forum and receive a certificate of recognition.

UW LEND is in its fifth decade. Former trainees hold leadership positions in academia, public health, community programs, and health care facilities across the nation. LEND has a major responsibility for continuing education and technical assistance in the state of Washington and the WWAMI (Washington, Wyoming, Alaska, Montana, and Idaho) region.

UW LEND partners with major advocacy groups, programs affiliated with UW, Seattle Children's Hospital, State of Washington Title V programs, and community partners to implement a state-of-the-art curriculum.

Nutrition Focus Newsletter

Nutrition Focus is an online newsletter that focuses on nutrition challenges of children with special health care needs and their families. The newsletter is written for health care providers and others who work with children with special health care needs. The goals of the newsletter are to increase awareness of nutrition and to share useful assessment and intervention strategies within the health care community. Continuing Education credit is available.

Each online article highlights a specific disorder or nutrition concern and offers practical suggestions and guidance for families and health care professionals. Sample topics include: Nutrition Issues for Children with Down syndrome; Intrauterine growth retardation and small for gestational age - Nutrition Management; Homemade blenderized tube feedings; Eating/feeding problems of children; Emergency Preparedness - Helping Families and their CSHCN,  Transition for adolescents with special health care needs to adult health care and nutrition services; Breastfeeding the infant with special health care needs, Pediatric Malnutrition, Weaning from Tube Feedings, and Family Centered Care.

Pacific West Maternal & Child Health Distance Learning Network - Nutrition and Oral Health for Children

This project is part of the Pacific West Maternal and Child Health Distance Learning Network that was developed by a collaboration between CHDD and the University of Southern California's UCEDD. The network was overseen by nutritionists from state Title V programs in HRSA Regions VII, IX and X. It was developed in response to the training needs identified by maternal and child health practitioners providing services in the Pacific West.

The Nutrition and Oral Health component includes development and implementation of a distance-learning curriculum on nutrition and oral health for children. The curriculum was developed with the help of advisory group members from HRSA regions VIII, IX, and X and other experts in the field of nutrition and oral health. This web-based curriculum is intended for use by dental professionals, primary care providers, nutritionists, educators, therapists, and others who serve young children. The curriculum includes practical examples and family-centered practice and cultural competence are incorporated into the material. Continuing education credit is available for dental and nutrition professionals upon completion of this web-based training at http://depts.washington.edu/pwdlearn/.

Pacific West Maternal & Child Health Distance Learning Network - Nutrition for Children with Special Health Care Needs

This project was part of the Pacific West Maternal and Child Health Distance Learning Network that was developed by a collaboration between CHDD and the University of Southern California's UCEDD. The network was overseen by nutritionists from state Title V programs in Health Resources and Services Administration (HRSA) Regions IX and X. It was developed in response to the training needs identified by maternal and child health practitioners providing services in the Pacific West and by MCH continuing education program priorities established in maternal and child nutrition.

A computer-based curriculum, Nutrition for Children with Special Health Care Needs, was developed with an interdisciplinary Advisory Group made up of practitioners from state Title V programs in HRSA regions IX and X. The curriculum is available on-line and is composed of six self-study modules. Continuing education credit is available for nutrition professionals, and the material is also used by nurses, physicians, nurse practitioners, and therapists. In addition to continuing education, the material is also used as a reference by several publications and by individual practitioners. This is available on-line at http://depts.washington.edu/pwdlearn/.

Parent Autism Support Service (PASS)

The Parent Autism Support Service (PASS) is a program structured to support parents in the early months after a diagnosis of autism. The PASS Program is run by the Parent Professional Partnership, also known as the Family Leadership Discipline of the University of Washington LEND program. Faculty and Family Trainees who have children with special needs, or are very knowledgeable of the services and support available to families of children with autism, provide follow-up to families one-week post diagnosis and then monthly for six months. During the six months, families are connected to providers within their local communities to continue to support them in the care of their child.

COVID-19 restrictions and recommendations have increased virtual services for some agencies. The PASS program is in the process of creating a video library to assist families new to developmental disabilities with vocabulary, resources and parenting strategies.

The PASS program has been in place for six years and has provided care coordination to over 150 families who have children newly diagnosed with autism at the University of Washington. Email passvc@uw.edu for more information.

Pediatric Audiology Clinic

The Pediatric Audiology Clinic has three primary goals:

1. To identify hearing loss as early in life as possible;
2. To provide access to hearing technology; and
3. To coordinate follow-up services for intervention, monitoring and ongoing evaluation.

The Pediatric Audiology Clinic serves about 200 clients each year at CHDD. The average age of these clients is 2.4 years. About 25% of clients who are evaluated are identified as having a hearing impairment. Universal newborn hearing screening was implemented at UWMC in 2004 and has been a success, continuing to be well-received by both the nursing and medical staffs. This program is a collaborative effort between the Pediatric Audiology Clinic and the Department of Otolaryngology/Head and Neck Surgery at the UWMC. Data from this program are sent to the Washington State Early Hearing Detection, Diagnosis, and Intervention database for both neonatal screening outcomes and follow-up diagnostic testing.

Pediatric Audiology Trainee Emphasis (PATE)

This project provides specialized training for Doctor of Audiology (Au.D.) students at UW. A major focus of PATE is involvement of Au.D. students as long-term trainees in the LEND (Leadership Education in Neurodevelopmental and related Disabilities) program at the CHDD during the second and third years of their four-year program. Trainees receive didactic and clinical experience to prepare them to provide services in clinical, early intervention, and educational settings and to provide counseling and support services to families. They also learn to work collaboratively within interdisciplinary teams and to use their skills and knowledge to become leaders in their discipline. The project has a specialized curriculum that is disseminated widely to help increase community capacity for pediatric audiology services.

School Medical Autism Review Teams (SMART)

Children and families in many rural communities in Washington State are unable to access a timely assessment for autism or other developmental disabilities and get connected to helpful services. They may wait for 1-2 years for an autism evaluation at a distant tertiary care center because there is no option closer to home. Transportation and language barriers are also issues for many families. School Medical Review Teams (SMART) were created in rural Washington State communities to address this challenge. There are seven operational SMART teams and This project is one of the priorities that has come out of the work in CAM communities.

SMART is a model that builds on and expands community capacity in rural and underserved communities that do not have access to a local multidisciplinary diagnostic center. Using a shared document, the SMART tool, families are able to collect records of evaluations from their school, early intervention agency, local providers, and pediatrician to inform an interdisciplinary evaluation and diagnosis of autism. In the SMART approach, experienced pediatric primary care providers, schools, early intervention agencies, and families come together and share their knowledge and evaluation results in order to facilitate a virtual, comprehensive assessment of a child. This process provides a close link between a child's primary care provider (PCP) and school team, who sees the child on a daily basis. Some larger communities are choosing a Network instead of team approach, where there are multiple clinicians who diagnose children, but have organized countywide processes to receive school and early intervention assessments and connect children to needed services. In combination with Autism Center of Excellence (COE) training of pediatric primary care providers through the Washington State Health Care Authority (HCA), SMART is a mechanism that allows children to qualify for Applied Behavior Analysis (ABA) therapy covered by Medicaid.

UW LEND Interdisciplinary Interactive Modules

The purpose of these online modules is to support workforce development of health care professionals who work with people that have developmental disabilities by enhancing knowledge of the contributions of various disciplines. The seven modules (audiology, psychology, physical therapy, speech and language, occupational therapy, nutrition and social work) were prepared by LEND faculty and other experts. Each module focuses on the contribution and roles of a specific health care discipline, illustrating the unique and shared roles within an interdisciplinary team setting. They allow self-paced learning and disseminate the interdisciplinary training curriculum to a broad audience. The modules are required curriculum for all UW LEND trainees, and may also be accessed by trainees in other LEND programs across the US, as well as undergraduate and graduate students in various academic and training programs at the University of Washington.

WA State EHDDI Learning Community

The WA State Early Hearing-Loss Detection Diagnosis and Intervention (EHDDI) Learning Community is supported by a collaboration between the Washington State Department of Health EHDDI program and the University of Washington. Professionals at the UW Center on Human Development and Disability and Speech and Hearing Sciences Department provide professional continuing education training through webinars, in-person seminars, and online resources.

The WSELC provides training and technical support to professionals across disciplines and across the state. The WSELC is also a place to connect, share ideas and results, and learn from each other through both in-person and virtual interactions. The WSELC aligns professionals around common goals and best practices to support children who are deaf and hard of hearing and their families. Professionals involved in this learning community include newborn hearing screeners, pediatric audiologists, family resource coordinators, and early intervention providers practicing in the state of Washington.

Critical Disability Studies - Understanding Allyship

Addressing issues of diversity, equity, and inclusion (DEI) have become central in implementing inclusive and socially responsible practices in rehabilitation education. Yet, the constructs of disability and d/Deaf identity and culture, as well as ableism and allyship are often overlooked, or approached from outdated philosophical approaches that pathologize disability and fail to prioritize the lived experiences, expertise, intersectionality, and self-identified needs of people with disabilities. A Critical Disability Studies framework may provide the background for understanding and responding to these issues through allyship. The purpose of this study was twofold: 1) To understand the lived experiences of ableism and allyship from faculty, staff, and students on University of Washington (UW) Campuses who identify as d/Deaf, disabled/with a disability, or as having a chronic health condition; and 2) to co-create an evidence-informed disability allyship training curriculum based on these experiences that includes customizable modules and tools for campus units within rehabilitation education and beyond.

Developmental Disabilities Council (DDC) Collaborations

The primary role of the Washington State Developmental Disabilities Council (DDC) is to make public policy recommendations to the Governor and state policy makers on issues of importance to individuals with intellectual and developmental disabilities (IDD) and their families. The Council is comprised of 27 members appointed by the Governor, at least 60 percent of whom must be individuals with IDD, parents or other family members, or guardians. Also serving on the Council are representatives of service providers and principal state agencies that provide funding to or services for individuals with IDD, and the state Protection and Advocacy organization, Disability Rights Washington (DRW), and the UCEDD.

The UCEDD and the DDC collaborate to identify and work on issues facing individuals with IDD. These issues are addressed through policy recommendations as appropriate as well as through advocating for further research, training, and services. In addition, the UCEDD, DDC and DRW (AIDD network partners) have committed to the ongoing support of the Allies in Advocacy to become a fourth AIDD network partner. Additional long term collaborative activities include parents with developmental disabilities, access to and use of technology, criminal justice reform within the Department of Corrections and Juvenile Rehabilitation, and strengthening the advocacy partnership with state agencies in Washington State. An example of increasing partnerships with agencies has been current efforts with the Washington State Department of Health (DOH), Area Agencies on Aging (AAA), and the Washington State Independent Living Centers (SILCs) to increase access to Covid-19 vaccines, in collaboration with the AIDD Network Partners. All these collaborations support UCEDD's mission to work on systems change through collaborating with individuals with IDD and advocacy groups.

Disability Studies Program

The aim of the Disability Studies Program (DSP) is to develop and integrate disability studies curricula across disciplines and departments university-wide. The CDPI Director served a six-year appointment as the Director of the Disability Studies Program and continues to teach in the program and participate in the university-wide Disability Studies faculty meetings. Faculty members work collaboratively to increase the awareness of students and faculty about disability related issues through expanding disability studies course offerings and offering additional educational opportunities for the campus community and the public. The Disability Studies Program is a permanent program in the Undergraduate College of Arts & Sciences at the University of Washington offering an undergraduate Disability Studies minor and Disability Studies major through Individualized Studies in the College of Arts & Sciences. The program includes three core courses: Disability & Society: An Introduction to Disabilities Studies; Disability Law, Policy, & the Community; Civil & Human Rights Law for People with Disabilities: National and International Perspectives. In addition, the program has been successful in offering additional courses sponsored by existing academic departments and schools - e.g., bioethics, rehabilitation medicine, sociology, psychology, and law. Three courses have also been developed and offered through the Study Abroad program; one undergraduate course on assistive technology in Brazil, a graduate course in the rights of the children with disabilities to health in Cambodia, and a third course on assistive technology in South Africa.

The DSP was awarded a President's Diversity Appraisal Implementation Fund to develop and provide the Disability Studies Curriculum Transformation Seminar to UW faculty. More recently, the program has received a Simpson Center grant to develop a graduate certificate in Disability Studies and to build community among graduate students interested in disability studies from departments across campus. The DSP has offered numerous conferences on topics of importance to advancing disability rights, addressing such issues as eugenics and disability, disability rights in Asia, human and disability rights internationally, and the ethics of medical "treatments" on individuals with IDD.

UCEDD Consumer Advisory Council

The UCEDD Consumer Advisory Council (CAC) was established to provide a vital level of input to the UCEDD to guide the direction of the center and to inform the community of our outreach activities. The CAC members meet three times a year to advise on strategies and provide feedback to the UCEDD on services, training, and policies that are needed to support people with developmental disabilities and their families. The CAC is comprised of self-advocates, family members of children and adults with intellectual/developmental disabilities, and directors from the UCEDD, Disability Rights Washington, the Washington State Developmental Disabilities Council, and Allies in Advocacy. Additional members include state agencies and community advocacy organizations. The majority of Council members are individuals with intellectual/developmental disabilities or family members. This composition ensures that the perspectives of these communities are heard and that major initiatives of the UCEDD are responsive to the needs of individuals with intellectual/developmental disabilities. CAC members act as a sounding board for UCEDD faculty and staff members when new programs are developed and existing programs are up for renewal. CAC members also identify issues for UCEDD outreach efforts, such as inclusion, diversity, siblings, pre-service connections for health care providers, health promotion for adults and elders, criminal justice, teaching behavioral skills to providers, training school district staff on positive supports, housing, and creating inclusive communities. Currently, the CAC has created two committees on topics of current importance. The first is on developing post-secondary educational opportunities at the University of Washington. The second committee has been formed to develop a UCEDD plan of action on Equity, Diversity, and Inclusion (EDI).

Autism Genetics Clinic

The purpose of the Autism Genetics Clinic is to evaluate and diagnose the cause of autism in children and adults. A subset of patients with ASD has an identifiable genetic cause, and for those families it answers the question of "why" the child has autism. A specific cause can provide the family with information about prognosis and enable precise determination of recurrence of autism in other children in the family. The outpatient clinic visit for a new patient takes place with a physician who is a specialist in Neurology and Genetic Medicine and a genetic counselor. A three-to-four generation family pedigree is taken. A complete medical history of the child is also taken, and a physical examination is performed. Copies of any prior laboratory results, as well as any neuroimaging studies, are obtained and brought to the visit where they are reviewed. Clinic personnel then discuss their assessment and recommend any further clinical genetic tests which are typically done on blood or urine. Results are discussed with the family at a follow-up visit or by telephone, and a summary is sent to the child's primary doctors and other providers as requested by the family. Families who seek a clinical genetic evaluation often do so for the following reasons:

1. There is family history of multiple people with ASD;
2. Other medical problems or distinctive features are present;
3. Patients have a test result that is difficult to interpret; or
4. A patient's family is interested in genetic research studies, and comes to the clinic in order to exclude known genetic causes prior to enrolling in a research study.

Phone: 206-598-4030

Biochemical Genetics Clinic

The Biochemical Genetics Clinic provides evaluation, consultation, and management services to clients of all ages with a variety of metabolic disorders. Metabolic disorder is a term that encompasses a variety of disorders that result from an inherited inability to produce a particular enzyme necessary for normal metabolism of proteins, fats, or carbohydrates. Because inherited metabolic disorders are rare, many providers are unfamiliar with the complex treatment regimens and other health needs associated with a particular disorder. Consistent and ongoing nutritional therapy to compensate for the missing enzyme is necessary for a person born with one of these disorders. Without therapy, toxic chemicals build up in the blood and tissues, and can lead to permanent intellectual disability and other disabilities. Clinics are conducted by an interdisciplinary team that includes a pediatric geneticist, metabolic nutritionist, genetic counselor, and psychologist. Management of these disorders generally requires precise manipulation of diet using specialized medical formulas and foods, along with medications. Most children have regular laboratory testing to monitor their management. Staff provide counseling about the heritability of particular disorders and guidance on family planning.

Phone: 206-598-1800

Genetic Counseling Graduate Program

The University of Washington Genetic Counseling Graduate Program (GCGP) at the CHDD trains future genetic counselors who will join the workforce that's ushering in the new era of precision health. This program is built on the firm belief that genetic counseling should be available to every person and delivered in an accessible, patient-centered manner. Genetics is a journey that every person approaches from their own unique background and experiences. Genetic counselors must quickly assess where a person is, identify where they need to go and then guide them along the way. This is what makes our profession so rewarding and at the same time so challenging. Through your training in the GCGP, future professionals will acquire the skills and knowledge needed to meet these challenges and reap the rewards of this dynamic profession. Graduates of the Genetic Counseling Graduate Program earn a Master of Science degree from the Division of Medical Genetics in the Department of Medicine. The program is accredited by the Accreditation Council for Genetic Counseling.

Ideally located at the CHDD that houses many research and clinics for neurodevelopmental disabilities with genetic etiology. In collaboration with other CHDD clinicians, genetic counseling students will work with individuals and families who are affected by these conditions and help them uncover their diagnosis. Genetics counseling students will rotate through the in-house clinics such as the Fetal Alcohol Syndrome, Biochemical Genetics, PKU, and Down Syndrome. GCGP students will also be trained to become clinician researchers through their capstone projects, in which students are encouraged collaborate and partner with the LEND program. In addition clinical and research, students will have opportunities to be involved in supplemental activities such as patient advocacy, connecting patients and families to resource.

Neurogenetics Clinic

The UCEDD's Neurogenetics Clinic is co-sponsored by the Departments of Neurology and Medicine (Medical Genetics). The clinic's purpose is to evaluate, diagnose and provide genetic counseling and long-term management for patients and families with a wide variety of genetic diseases of the nervous system. This clinic is also a clinical training site for medical students, residents, and fellows.

The Neurogenetics Clinic is a full-day clinic that meets three times each month. Each year the clinic serves over 300 clients who have an array of neurogenetic disorders including Huntington's disease, Charcot-Marie-Tooth neuropathy, hereditary neuropathy, hereditary ataxias, muscular dystrophies, familial dementia, familial movement disorders, leukodystrophies, Neimann Pick type C, and others. This clinic uses an interdisciplinary team approach that includes a neurologist, a neurogenetic nurse specialist, a genetic counselor and a medical social service worker. The patients receive examination, diagnostic testing, genetic counseling, attention to their social service needs and longitudinal follow-up. This represents a unique clinical resource in the state of Washington and includes an outreach clinic on an annual basis in Spokane and Yakima.

Phone: 206-598-4030

PKU Clinical Program

The Phenylketonuria (PKU) Clinic provides diagnosis, assessment, medical nutrition therapy, genetic counseling, and consultation for ongoing dietary management and health supervision, as well as evaluation of treatment outcomes to all children with PKU and their families. Phenylketonuria is a genetic disorder in which the child is born without the ability to break down the amino acid phenylalanine (phe). This causes higher than normal levels of phe in the blood which results in damage to the brain and intellectual disability if left untreated. Fortunately, if a child is identified by Newborn Screening, diagnosed in early infancy, and receives appropriate treatment, normal physical and cognitive development can be expected. The treatment of PKU requires lifelong management of phe levels regulated through the client's diet. Clinicians at the PKU clinic work with families and clients to ensure that the child is receiving adequate nutrients for normal development while limiting intake of foods high in phe.

The PKU Clinic is comprised of a team of trained health care professionals that represent multiple disciplines. Long-term interdisciplinary planning and follow-up services are provided to more than 100 children each year to prevent adverse consequences of this disorder. Clinics are held monthly and have a group format. Patients are organized into sub-clinics by age, a group format which lends itself to parents and children developing a strong support network. Focus is not only on medical and dietary health, but independent thinking and self-management skills facilitated by educational curricula in the clinic. As the children near adulthood they are enrolled in the clinic's Adolescent Transition Curriculum, designed to prepare them for PKU management and life management in the Adult PKU Program.

Phone: 206-598-1800

EEU - Infant Toddler Program

The Infant and Toddler Program (ITP) serves children ages birth through 3 years. At the EEU we offer a variety of early-intervention services to meet the needs of families and their children. These services are delivered by different providers based on the area: special education teachers, occupational therapists, speech language pathologists, physical therapists and family resource coordinators. The ITP provides intervention through inclusive playgroups where all children learn and play together. In addition to playgroups at the EEU, the ITP also serves children and their families by providing community and home-based services. These are determined by the needs of the child and the family and can take place in the home, at the center or in other community settings.

The ITP serves families in the King County area through contracts with the DDA (Developmental Disabilities Administration) and local school districts.

INFANT PLAYGROUP | The ITP offer a playgroup for newborn children to 12 months who have developmental delays. This is a weekly playgroup where parents and infants receive the support to address specific areas of need by each child as they arise throughout the year.

TODDLER PLAYGROUP | The ITP offers inclusive playgroups for children ages 1-3 years old. These twice-a-week sessions are inclusive, meaning that children with and without disabilities participate. At these sessions, toddlers work on socialization, communication, cognitive, self-help and motor skills and receive consultation services from occupational, physical and speech therapists.

DIRECT SERVICES | The ITP serves the EEU children and their families by providing direct services from occupational therapists, speech language pathologists, and physical therapists in home, center and community settings as determined by the individual needs of the child and family.

EEU - Kindergarten

The EEU provides a full-day, kindergarten program that includes students with and without disabilities. All children, regardless of ability, learn along-side their peers.

The kindergarten teams meet the needs of all students by following and adapting the district’s general education curriculum, and providing instruction in both large and small group settings. These decisions are made on a child-by-child basis and change based on learning outcome and needs throughout the school year. Our goal is to build a strong community of diverse learners, with an emphasis on membership and belonging. We celebrate the strengths of individual children, while providing them with responsive instruction to build academic and social skills and increase independence.

The program emphasizes the development of academic, social, communication and motor skills that enable children to be successfully in elementary school. Physical therapists, Occupational therapists and Speech Language Pathologists work with the teaching staff to provide services within the context of the general education and classroom environment. Special Education and Related Services are provided by EEU staff through a contract with Seattle Public Schools (SPS).

EEU - Project DATA

Created by Haring Center educators, researchers, and graduate students Project DATA (Developmentally Appropriate Treatment for Autism) is a groundbreaking, replicable, sustainable, inclusive classroom model for young children with Autism Spectrum Disorder (ASD). This program has been replicated by school districts throughout the state of Washington and the rest of the United States.

At the EEU, Project DATA (Developmentally Appropriate Treatment for Autism) is a program in which children on the autism spectrum currently enrolled in our preschool programs can receive additional services integrating the best, most current educational practices from the fields of early childhood special education and applied behavior analysis. In order to ensure the best possible outcomes for children with autism and their families, the program is also influenced by guiding principles, which serve as the cornerstone of Project DATA:

1. Children with autism are children first, and the program must be a safe and nurturing place for children
2. Data-based decision making must be employed across all aspects of the program
3. Children with autism must have multiple opportunities to interact successfully with their typically developing peers every day
4. The program must be acceptable to consumers and must fit in the social contexts of public schools

A nationally recognized program that began at the Haring Center, Project DATA is the model for which SPS designed its extended day special education program. Project DATA is provided through a contract with Seattle Public Schools.

EEU - Seattle Preschool Program

The Seattle Preschool Program (SPP) offers high quality, affordable preschool to children across the city of Seattle, making high quality early learning equitable, accessible, and affordable for all families.

In the SPP classrooms at the EEU, our teachers follow a general education curriculum called Creative Curriculum, which is a unit-based curriculum that provides students with the opportunity to explore a variety of topics while receiving instruction in all academic areas including literacy, mathematics, fine-motor, gross-motor, and social-emotional skills. The classroom staff adapts this curriculum to meet the needs of all students, and they embed specific learning targets within small or large-group lessons providing access and encouraging participation. Our SPP classrooms are play-based, and children are given many opportunities to follow their interests and play with their friends with a variety of materials in and outside of the classroom.

The SPP classrooms at the EEU emphasize the development of pre-academic, social, communication and motor skills that enable children to successfully transition to elementary school.

In addition, teams implement systematic instruction to children with special needs. Physical therapists, Occupational therapists and Speech Language Pathologists work with the teaching staff to provide services for students who qualify. Special Education and Related Services are provided by EEU staff through a contract with Seattle Public Schools (SPS).

Haring Center - Professional Development Unit

The Professional Development Unit works with the next generation of professionals in special education, early learning, applied behavior analysis and related disciplines, providing hands-on experience and expert consulting and coaching in any educational context with an emphasis on how to build more inclusive settings. The PDU is a resource to any school or agency seeking assistance with staff training, coaching, program review, curriculum development and implementation of inclusive programs. The PDU also provides supervision for individuals fulfilling the requirements to become a Board Certified Behavior Analyst (BCBA). Supervision is provided for all Behavior Analyst Certification Board (BACB) experience categories including Independent Fieldwork, Practicum, and Intensive Practicum. The Haring Center, PDU is an ACE provider and offers continuing education opportunities for BCBAs. These opportunities include a monthly journal club, speaker series, and workshops designed to help working professionals stay up to date with current research.

Haring Center - Research

Haring Center research has led to 50 years of innovation in early childhood and special education. Researchers work with teachers, families and communities to create new curricular approaches, instructional strategies and technological advances in education. Researchers study how approaches are adopted and used to support children and families in everyday settings. As a result of this work and the widespread dissemination of our innovative practices, countless students are receiving the education they deserve in inclusive classrooms and community programs.

All research at the Haring Center is driven by a mission to build inclusive communities that support the learning and developmental needs of children and families of all abilities and backgrounds. The transformational research conducted informs policies and practices in inclusive education.

More details on all current research and past research at www.haringcenter.org.

Project ECHO: Providing Education and Support to Caregivers of Children with Challenging Behavior

The purpose of this project is to provide education and support to parents, families and caregivers of children who engage in challenging behavior. This project seeks to provide parents with the education and support necessary to implement behavioral strategies and supports at home. Education and support are delivered using Project ECHO, a case-based telehealth learning program. This online platform provides opportunities for parents and caregivers to present difficult situations at home regarding challenging behavior to a group of parents with similar experiences, as well as other experts in the field, to brainstorm and develop sustainable interventions. Positive outcomes of this intervention include child, parent and family outcomes, as expertise is disseminated through this collaboration experience.

Access to On-Time Autism Intervention

This project is a collaboration between CHDD UW Autism Center and Haring Center funded by Alyssa Kreider and Bill Sunderland through the Seattle Foundation Access to On-Time Autism Intervention Fund. Through this collaboration, the two CHDD centers will develop a model program that provides young children with diagnostic evaluations. The goal of this project is that this model program will benefit young children as soon as Autism Spectrum Disorder symptoms emerge with seamless referral, and supportive, evidence-based intervention tailored to each child and family, without waitlists and regardless of ability to pay. This project's objectives consist of development of best practices for the model program and providing training professionals in school and clinical settings.

UWAC - Tacoma Program

The UW Autism Center- Tacoma satellite program provides an array of clinical services and is a vehicle for training professionals and paraprofessionals to meet the needs of individuals with ASD. At the UW Autism Center- Tacoma, diagnostic evaluations and interventions are provided by a multi-disciplinary team that includes psychologists, behavior analysts, and speech / language pathologists. The mission of the UW Autism Center- Tacoma's training program is to increase the capacity of the South Puget Sound area to serve children with ASD by providing high-quality training to community professionals and students. Community engagement is an integral part of the mission. As founding members of the South Sound Autism Partnership - this coalition of service providers, advocates, families, and community members work together to improve the effectiveness of autism service delivery in the South Puget Sound area.

UWAC Clinical Services

The UW Autism Center's Clinical Services provide state-of-the-art, comprehensive, coordinated services to families and individuals at risk or with autism spectrum disorder (ASD) from birth through early adulthood. Services are provided at both the UW Seattle and UW Tacoma campuses.

• Evaluations: Diagnostic evaluation to determine if a client meets criteria for ASD. Re-Evaluations for previously diagnosed clients who need assessment of current functioning, a second opinion, or updated treatment recommendations.
• Medical Consultation: Short-term consultation with a Developmental Pediatrician to discuss medical concerns such as, seizures, motor disorders, genetic concerns, or related issues.
• Sleep Clinic: Interdisciplinary team consultation to address behavioral and medical factors contributing to sleep concerns in children up to the age of 18.
• Infant Clinic: A clinic for children 24 months and younger dedicated to early detection, monitoring, and intervention when concerns about ASD are present.
• Speech Services: Assessment and treatment to help individuals with ASD learn strategies to interact and communicate.
• Social Skills Groups: Small group programs provide children and adolescents with tools for navigating their social environment.
• Psychological Therapy: Psychotherapy with parents, siblings or individuals with ASD to address difficulties with mood, life skills, daily coping, and interpersonal relationships.
• APEX Summer Camp Program: Provides peer experiences to children with ASD and builds social and behavioral skills in real-world environments. APEX includes a 5-week intensive summer camp program, a weekly booster program, and other programing throughout the year.
• Applied Behavior Analysis Intervention Services: Our Behavior and Education Consultants provide evidence-based treatment based on the principles of applied behavioral analysis (ABA), identify individualized goals to teach new skills and address challenging behaviors, develop learning activities and support individuals with ASD in a variety of settings.
  • Intensive In-Home ABA Programs
  • Short-Term Consultation
  • Parent Coaching
• Client-Focused Skills Coaching: Consultants work directly with client with ASD to develop specific identified skills and reduce challenging behaviors.

UWAC Community Engagement

The UW Autism Center works to increase knowledge and acceptance of autism spectrum disorder (ASD) and related developmental disabilities among professionals and the public. It aims to promote detection of ASD, inform the community of effective intervention and life-span support, and to learn from community partners to increase the availability of innovative, effective, and supportive programs for individuals with ASD and their families.

• Community Events: The UW Autism Center participates in many community events including the Autism Speaks Walk, Seattle Symphony Sensory Friendly Concert Series, Lewis County Autism Coalition Conference, Microsoft Giving Campaign, Seattle Mariners Autism Speaks Event, Run 2 Pieces, Infant and Early Childhood Conference, Tee It Up Fore Autism, Washington Autism Alliance & Advocacy Day out for Autism, and the UW Autism Center Open House.
• Community Engagement Materials: The UW Autism Center develops materials such as newsletters, brochures, fact sheets, and guides that serve to increase acceptance of ASD and communicate about the work of the UW Autism Center.
• Website and Toll Free Number: The UW Autism Center maintains https://depts.washington.edu/uwautism/ and a toll-free information and resource line (1-877-408-8922).

UWAC Preservice Training Program

The UW Autism Center Education and Preservice Training Program offers clinical training and supervisory experience to graduate students and postdoctoral fellows in clinical psychology, school psychology, speech- language pathology, education, and related disciplines with the goal of preparing future professionals to provide direct service to or conduct research with children, adolescents, and adults with ASD. Training experiences are available to students at different levels of education, and may occur in either a research or clinical setting.

• Practicum placements of nine to twelve months are offered to graduate students in clinical psychology or school psychology, under the supervision of a licensed psychologist, graduate students in Speech-language pathology under the supervision of a speech-language pathologist.
• UWAC is an approved Board Certified Behavior Analyst (BCBA) practicum site for the UW College of Education ABA Master's degree program (one year commitment).
• Post-doctoral training is open to graduates in the fields of clinical psychology, developmental psychology, school psychology, and education, and related fields and typically occurs in the context of on-going research projects at the UW Autism Center.
• Students may take classes offered by faculty affiliated with the UW Autism Center.

UWAC Professional Training

The mission of the UWAC Professional Training Program is to provide high-quality training for community professionals, parents and caregivers, and students who interact with and serve individuals with autism spectrum disorders (ASD) across the Pacific Northwest.

• Professional Training Program at UWAC: The UWAC offers a variety of training opportunities including year-round workshops focused on topics such as Applied Behavior Analysis (ABA Bootcamp), the needs of newly diagnosed children (Stepping Stones), Educator Training Series, Addressing Challenging Behaviors, and ADOS-2 workshops.
• Professional Training in the Community: The UWAC also provides in-service training and consultation to schools, community agencies, and mental health settings.  Services include workshops individualized to the needs of the requesting agency, classroom consultation, and student consultation (including IEP development and Functional Behavior Assessments).
• Summer Workshop Series: Each summer, the UWAC partners with community agencies across the state to offer training opportunities to community professionals, educators, parents, and caregivers who interact with and serve individuals with ASD in rural areas that may not have a large community of autism specialists.
• Seattle Teachers Autism Symposium (STAS): The UWAC hosts an annual symposium that is free of charge to educators in Washington.
• APEX Summer Camp Counselor Training: Over 40 graduate and undergraduate students from around the world participate in an intensive 7-week clinical internship at the APEX Summer Camp program, including 2 weeks of training and 5 weeks of direct intervention using evidence-based practices.