AUCD4all: Leadership in State Policy


AUCD 2018 gala logoStates are often the catalysts for innovation, and AUCD members are engaging with policy makers and coalition partners in every state and territory by presenting research, conducting training, and developing and advocating for policies that will improve the lives of children and adults with disabilities. AUCD brings together leaders from all sectors who are tireless advocates for disability rights, equity, and inclusion. These leaders advocate with their legislature to open scholarships to students with intellectual disabilities, engage with their Medicaid agency to guarantee home and community based supports, partner with local school boards or school districts to eliminate policies for restraint and seclusion, and train and empower self-advocates and early career professionals to have a positive impact on the lives of people with disabilities and their communities. Below are examples of just some of the ways AUCD members are working in partnership to advance state-level policy for people with disabilities.


Read Stories from Network Centers

Civitan-Sparks Clinics/UAB LEND & UCEDD
Birmingham, AL
Institute for Disability Studies
Hattiesburg, MS
Partners for Inclusive Communities
Little Rock, AR
Missoula, MT
Tarjan Center at UCLA
Los Angeles, CA
Carolina Institute for Developmental Disabilities, University of North Carolina
Chapel Hill, NC
University of Southern California UCEDD
Los Angeles, CA
The Boggs Center on Developmental Disabilities, Rugters Robert Wood Johnson Medical School
New Brunswick, NJ
JFK Partners
Aurora, CO
NvLEND/Nevada Center for Excellence in Disabilities
Reno, NV
Mailman Center for Child Development
Miami, FL
Rose F Kennedy UCEDD
Bronx, NY
Center on Disability Studies
Honolulu, HI
Westchester Institute for Human Development
Valhalla, NY
University of Iowa Cewnter for Disabilities and Development
Iowa City, IA
Westchester Institute for Human Development
Valhalla, NY
Center on Disabilities and Human Development
Moscow, ID
University of Cincinnati Center for Excellence in Developmental Disabilities (UCCED)
Cincinnati, OH
Insititute on Disability and Human Development, University of Illinois at Chicago
Chicago, IL
OUHSC Section of Developmental & Behavioral Pediatrics
Oklahoma City, OK
Riley Child Development Center LEND
Indianapolis, IN
Portland, OR
LSU Human Development Center
New Orleans, LA
Paul V. Sherlock Center on Disabilities
Providence, RI
Institute for Community Inclusion
Boston, MA
Center for Disability Resources (UCEDD & LEND)
Columbia, SC
The Institute for Community Inclusion, UMass Boston, Children's Hospital
Boston, MA
Boling Center for Developmental Disabilities
Memphis, TN
UMass Medical School / E.K. Shriver Center
Worcester, MA
Vanderbilt Kennedy University Center for Excellence in Developmental Disabilities
Nashville, TN
Center for Community Inclusion & Disability Studies, UCEDD
Orono, ME
Texas Center for Disability Studies
Austin, TX
Michigan Developmental Disabilities Institute
Detroit, MI
LoneStar LEND
Houston, TX
Institute on Community Integration
Minneapolis, MN
Utah State University Center for Persons with Disabilities
Logan, UT
University of Missouri Kansas City, Institute for Human Development
Kansas City, MO
Waisman Center
Madison, WI

The Alabama Regional Autism Network

Civitan-Sparks Clinics/UAB LEND & UCEDD; Birmingham, AL

The UAB LEND & UCEDD worked in collaboration with the State Autism Council, the State Department of Mental Health and Intellectual/Developmental Disabilities and some state legislators to establish the Alabama Regional Autism Network (Alabama RAN). The Alabama RAN currently has 5 centers at 5 Universities in key locations across the state. The mission of the RAN centers is to serve those who have questions, concerns, or resource needs regarding themselves, a family member, friend, client, patient, or student with diagnosed or suspected Autism Spectrum Disorder (ASD). The RAN centers provide professional training programs, technical assistance and consultation services, individual and direct family assistance in the home, community, and school, and public education programs. These programs are currently funded by the state of Alabama.

Partners: State Autism coordinator, Anna McConnell; the Assistant Commissioner for ID/DD in mental health, Courtney Tarver; State Senator and chair of the Alabama Autism Council, Cam Ward; and several faculty at UAB, University of South Alabama and Auburn University

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Advocating for New Autism Services in Arkansas

Partners for Inclusive Communities; Little Rock, AR

Partners for Inclusive Communities; Little Rock, ARThe development of programs and policies to improve autism services in Arkansas evolved over the course of several years. An early start was when the University Center for Excellence in Developmental Disabilities (UCEDD) in Arkansas, Partners for Inclusive Communities (Partners), brought together a group of family advocates to establish the Arkansas Autism Resource and Outreach Center (AAROC). The mission of the AAROC is to provide hope, direction & support to families of individuals diagnosed with an autism spectrum disorder. This is accomplished through parental support, education and training, and awareness and advocacy. AAROC provides supports by helping families with a new diagnosis understand the condition and begin navigating the confusing maze of services, providing ongoing training, connecting families with one another, and sponsoring fun activities. This package of family support and training has resulted in a strong grassroots network and placed Partners in its center. Partners worked with this network to advocate for several policies and programs that expanded services to individuals with autism. The first major legislative win was passing a mandate that health insurance policies cover autism services. The next significant outcome of the advocacy of the autism community and Partners was establishing a Legislative Task Force on Autism that has functioned for five years. The Task Force has promoted a number of policies and programs that have had a major impact, beginning with dedicating $1.5 million of a tobacco tax to a Medicaid waiver for autism. When this waiver program was established, the state developmental disabilities agency recognized that they would need help to run the program, identified the expertise that existed at Partners, and asked the UCEDD to administer the program for the state. By using the tobacco tax to match Medicaid dollars, the state had a total of $5 million for services, which allowed 100 children, under age seven, to receive 20 to 30 hours of intervention each week for two to three years. Based on the history of service usage, Partners and the state Medicaid agency identified that additional funds were available to serve more children and just received approval to serve 50 more children, raising the total number served to 150. Older children began receiving prescriptions for services as part of EPSDT and Partners was able to add a unit to provide services to them, as well as the younger children. The number of EPSDT prescriptions is rising substantially and in a few years may rival the size of the waiver program. The Legislative Task Force has examined a number of policy issues that impact not only children with autism, but children with other disabilities as well. One such policy is seclusion and restraints of students in special education. The Task Force has instituted voluntary school practices and reporting, with an understanding that if schools fail to comply they will move to legislative remedies. The Task Force continues to meet monthly and address issues facing individuals with autism, thereby continuing the impact of the policy advocacy of the UCEDD and their family network.

Partners: Arkansas Autism Resource and Outreach Center, family advocates, Legislative Task Force on Autism

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Employment Becoming a Real Option for Californians with Intellectual and Developmental Disabilities

Tarjan Center at UCLA; Los Angeles, CA

Tarjan Center at UCLA; Los Angeles, CAThe intractable problem of low employment for youth and young adults (YYA) with intellectual and developmental disabilities (IDD) cannot be solved by one agency alone. Collaboratives have been shown to be effective at addressing complex problems and powerful drivers of systems change. In 2011, the Tarjan Center UCEDD was one of 8 states awarded a 5-year Project of National Significance Partnerships in Employment system change grant by the Administration on Intellectual and Developmental Disabilities to address policy change at the state and local level, resolve systemic barriers, and enhance collaboration aimed at increasing the employment of YYA with IDD. The California Employment Consortium for Youth with Intellectual and Developmental Disabilities (CECY) was an alliance of 45 professionals, providers, family members and youth with intellectual and other developmental disabilities (IDD) from 25 agencies, committees, councils, and organizations. Guiding this work were two frameworks for building capacity for change; key elements from the model of High Performing States in competitive integrated employment (CIE) and the principles of Collaborative Leadership. The principles of Collaborative Leadership guided our process for increasing knowledge and building partnerships among state agencies and stakeholders to foster meaningful and sustainable changes in systems that support YYA with IDD. The main activities of CECY were the development of a shared vision and skills for collaborative partnerships at the state and local levels; identification of effective strategies supporting the transition to employment through 7 Local Employment Collaborative Teams and in postsecondary education through the College to Career Programs; increased knowledge skills, and attitudes through training, webinars, state and national conferences; and dissemination of information through members' extensive networks, through the CECY web site, and weekly CECY E-News. CECY also conducted Community Conversations in 7 communities across the state with members of the public, employers, civic leaders, disability service providers, families and youth with IDD to brainstorm ideas on how to increase the employment of people with disabilities. Sustainable changes accomplished in policy, and practice and state systems that will go beyond the years of the project include: the passage of Employment First legislation; the creation of an online Data Dashboard to monitor employment trends of people with IDD over time; a toolkit on braided services for wrap around supports, a career development guide for youth; and the identification of strategies used by our Local Employment Collaborative Teams and members to effectuate change to advance CIE. Dissemination of CECY's work was achieved through the publication of 3 peer -reviewed journal articles on braided and blended funding, community conversations and collaborative leadership and three policy briefs. Also, CECY members provided substantive contributions toward the California Blueprint for Competitive Integrated Employment (2017), a pro-active interagency plan produced by the Departments of Education, Rehabilitation and Developmental Services. The Blueprint establishes for the first-time benchmarks and expectations for CIE, outlines roles and responsibilities for each agency, and how individuals with IDD will be informed of the opportunities available for CIE.

Partners: The membership included representatives from four state agencies, the Departments of Rehabilitation, Education, Developmental Services and Employment Development Department, State Council on Developmental Disabilities, Disability Rights California, the Tarjan Center at UCLA, a University Center for Excellence in Developmental Disabilities, Special Education Local Plan Areas (SELPA) administrators, California Transition Alliance, Arc,the California Foundation for Independent Living, Family Resource Center Network of California, youth self advocates and family members

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Evidence-Based Guidelines for Infant and Toddler Social and Emotional Assessment and Screening

University of Southern California UCEDD; Los Angeles, CA

University of Southern California UCEDD; Los Angeles, CAIn 2013, the Office of Special Education Programs mandated a State Systemic Improvement Plan as a new requirement for federal support for early intervention services. California's Department of Developmental Services, through extensive stakeholder participation, chose to focus efforts on strategies that will result in infants and toddlers showing enhanced social and emotional development over the course of their time in the Early Start program. A component of the plan includes the promotion and implementation of evidence-based assessment of infant and toddler development. A document entitled Guidelines for Evidence-Based Infant-Toddler Social and Emotional Assessment and Screening was developed by the California Interagency Coordinating Council (ICC) on Early Intervention in response to a request from Part C Early Start service coordinators and service providers for guidance on best practices in social and emotional assessment and screening. The document reflects the ICC's ongoing commitment to family-centered approaches, family-professional partnerships, and interagency collaboration as the basis of the Individuals with Disabilities Education Act, Part C family service system. The goal of ongoing assessment and screening is to be responsive to parent concerns regarding the social, emotional and behavioral development of their infants and toddlers. The provision of child-family preventive intervention and intervention supports ensures that the young child leaving Part C is better prepared to cope with developmental and behavioral expectations; to explore, learn and make friends; and to be included as a member of the preschool, child care and neighborhood community. The document is posted on the Early Start Neighborhood which is a social network. The Early Start Neighborhood provides a virtual community for Early Start professionals and partners seeking training, technical assistance and resources on early intervention Part C requirements, implementation, and evidence-based practices.

Partners: California Inter-agency Coordinating Council (ICC) on Early Intervention Marie Kanne Poulsen ICC Chairperson Keck School of Medicine, University of Southern California Children's Hospital Los Angeles Douglas Erber Parent Fernando Antonio Gomez Parent Libby Woolford Parent Tony Thurmond State Legislature Rachelle Arizmendi Provider Pacific Asian Consortium in Employment Sally Grevemberg Provider Behavioral & Educational Strategies & Training Michelle Dove Head Start Sharon DeRego California Department of Developmental Services Sheila Self California Department of Education Leanne Wheeler California Department of Education Mary Watanabe California Department of Managed Health Care Richard Olney MD California Department of Public Health Kim Johnson California Department of Social Services Mary Sheppard California Department of Social Services Sandra Gallardo California Health and Human Services Agency

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Partnership to Keep Students Safe

JFK Partners; Aurora, CO

JFK Partners; Aurora, COJFK Partners was part of a collaborative to work for better accountability in, and safer alternatives to, the use of physical restraint. In the 2017 state legislative session, this collaborative with Disability Law Colorado (Colorado's Protection and Advocacy center) and other partners educated policymakers leading to successful passage of a bill that prohibits use of prone restraint in public schools.

Partners: Disability Law Colorado American Civil Liberties Union - Colorado Chapter Colorado Department of Education

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Collaborating for the Future: The Transformation of Children's Medical Services Managed Care Plan

Mailman Center for Child Development; Miami, FL

Mailman Center for Child Development; Miami, FLMy two decades in the LEND and UCEDD programs at the Mailman Center for Child Development provided critical preparation for the challenges of my new role as Deputy Secretary for the Florida Department of Health's Children's Medical Services (CMS). Like other states across the nation, we in Florida are in the midst of a dramatic transformation in the health care system. Insurers are moving to value-based care, making payments for providers based on outcomes, rather than on the volume of patients seen. In the midst of this shift to population health, we are all struggling with the question, "How do we ensure that children with developmental disability and other special health care needs (CSHCN) have access to high-quality health care?" While a perfect answer has not yet been identified, my experience and community connections as a LEND director has helped ensure that Florida's solution is based on stakeholder engagement and expert opinions.

Decades ago, CMS's original model offered direct services to CSHCN through specialty clinics, care coordination, and health insurance to CSHCN; its more recent iteration saw CMS become a managed care organization solely for CSHCN, known as the CMS Managed Care Plan (CMS Plan). Over the last 6 months, we have developed an Invitation to Negotiate (ITN), a document outlining our desires for a new service delivery model for the CMS plan and requesting that organizations bid on a contract to help bring it to life. During the process of drafting the ITN, our leadership team has consulted with national and state pediatric experts, CMS advocates and stakeholders, including organizations like the Florida Developmental Disability Council, the Family Network on Disabilities, and Parent-to-Parent of Miami. Our goal is to build on the core competencies that have made CMS a hallmark over time-like excellent care coordination and a strong provider network-while ensuring improved outcomes and access to care for children and families, streamlining administrative functions, and adding value to provider contracting. One consequence of our consulting with advocacy organizations is the recognition that services such as respite care are essential for our families. Our ITN for the CMS Plan outlines a host of such services that potential vendors may offer. Furthermore, we are working to ensure that the quality outcomes measures for the CMS Plan go beyond administrative datasets to include quality of life measures.

As health care in the U.S. moves towards value-based care, we have the opportunity to incentivize the system to address functional outcomes that matter to families of CSHCN. Our tag line at the Mailman Center for Child Development is "Improving Lives through Innovation, Impact, and Connection." Like all LEND and UCEDD programs, we pride ourselves on combining research, training, evidence-based practice, and public policy to improve the lives of people with disabilities. Putting this experience to use at CMS means that we have included-and are continuing to include-key stakeholders throughout the development and implementation of the new health plan model. As such, we are confident that our new service delivery model will be able to continue to adapt to the changes in the health care climate and to the needs of CSHCN and their families. --Jeffrey P. Brosco, MD, PhD

Partners: State and national pediatric experts CMS advocates and stakeholders Florida Developmental Disability Council Family Network on Disabilities Parent-to-Parent of Miami

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Advancing Visitable Housing in Hawaii

Center on Disability Studies; Honolulu, HI

Graphic representation of wheelchair user at foot of steep stairs to door open to inviting blue sky (purchased from Stockfresh)In November 2016, the Center on Disability Studies (CDS) completed a report to meet the State of Hawaii's obligation to identify "impediments to fair housing choice" and provide an improvement plan to the US Department of Housing and Urban Development (HUD). Hawaii made the unusual choice of focusing on people with disabilities because most fair housing complaints come from this protected class. The most significant finding of this report (entitled Analysis of Impediments to Fair Housing Choice in Hawaii with a Focus on People with Disabilities) was that many people with mobility impairments are unable to find affordable housing that is also accessible. The report's primary recommendation was to ensure that all new housing meets standards for the lowest level of accessibility, designated Type C in US and international building codes. Such housing is often called "visitable" because it allows users of wheelchairs, walkers, and canes to more easily visit friends and neighbors. Visitable features include: at least one zero-step entrance; interior doors with at least 32 inches of clear passage space; at least a half bath that is accessible on main floor; reinforcement in bathroom walls for future grab bar installation; space to maneuver a wheelchair in food preparation areas, and light switches and electrical outlets within comfortable reach for all. At the start of 2017, CDS launched an initiative to make it mandatory for all new homes to be visitable, including creation of a Hawaii visitable housing website plus a coalition listserv to disseminate information and coordinate actions. In addition, a visitable housing afternoon, featuring a panel discussion and workshop, was organized as part of CDS's annual Pacific Rim International Conference on Disability and Diversity in October 2017. One focus of effort is at the county level, because each of Hawaii's four counties has its own building code. An initial success was passage by the Honolulu City Council in April 2017 of a resolution (that the CDS Director helped draft) "strongly urging" the administration to incorporate visitability standards into the building code for new residential construction. Briefings have also been made to members of the councils in two other counties, and at least one of the councils is expected to take up the issue during 2018. At the state level, beginning July 2017 CDS worked with the State Legislature's Kupuna Caucus to finalize two bills developed by the CDS Director. The caucus consists of senators and representatives committed to improving the lives of Hawaii's rapidly growing senior population ("kupuna" is a Hawaiian word often translated as "respected elders"). The caucus welcomed the two bills as part of its 2018 legislative package because visitable housing can enable many seniors to "age-in-place". One bill requires visitability in all housing construction or renovation subsidized with local, state or federal funds, while the other bill offers tax incentives for privately financed construction or renovation. As of February 23, 2018, both Senate versions of the bills and their House counterparts remain alive, with CDS helping to encourage and guide testimony from supporters.

Partners: Hawaii Developmental Disabilities Council, Hawaii Self-Advocacy Advisory Council, Hawaii Disability Rights Center, Disability Communication and Access Board, Hawaii state chapter of the AARP, Curt Kiriu (Certified Aging in Place Specialist)

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The LONG Road Toward Employment First

University of Iowa Center for Disabilities and Development; Iowa, IA

University of Iowa Center for Disabilities and Development; Iowa, IAIowa has taken a long and winding road to where we are today in our employment first journey. We started working in earnest in 2009 when we held focus groups around the State asking, "what will it take?" and we joined the State Employment Leadership Network (SELN). We knew we needed policy and rate realignment and when Iowa's MHDS director asserted that Employment is the First and preferred option in our state (2012), addressing the policy disconnect became urgent! CMS Guidance and DOJ activities were also in play. Goal: Increase the array and quality of employment supports and services available to Iowans with disabilities with a service and funding system that is individualized and flexible over the person's employment lifecycle and that coordinates the use of all available resources toward individual jobs. There were three overarching must haves: 1-compliance with spirit and letter of CMS and other guidance; 2-"do no harm" by maintaining service levels and avoid unintended consequence of people left with nothing; and 3-must be cost neutral! We had a very transparent process of community meetings and a provider and stakeholder workgroup to develop new service definitions that complied with the CMS guidance, reimbursement rates tied to each employment service and employment service staff qualifications at a level to deliver quality services. Here are the steps we took:

  • Gathered Medicaid authorization, utilization, and claims data for all who received any of these services in the base year. 
  • Made some agreements about cost sharing with IVRS and prioritizing moving younger individuals from the segregated service. 
  • Created many "person flow" models considering maintaining services hours, considering provider capacity cost sharing with VR and cost neutrality.

We had 3,500 people to flow from segregated prevoc service through the phases of career exploration and job development into long term job coaching (LTJC). IVRS and Medicaid share the responsibility for the career exploration and job development and then Medicaid funds the LTJC. So we experimented with a person flow that was reasonable based capacity and created a cost neutral implementation. The model shows how the people move through the services and how the costs rebalance over time. We considered newly eligible individuals and those choosing not to pursue employment in the model. In the first year is within $9,000 of state costs and 154 people had new Jobs! At the end we have 4000 people in LTJC, 1880 receiving prevoc, largely as a wrap service, and 900 new to Day Hab. The model passed fiscal review for cost neutrality. This is hard stuff! Everyone needs time to sit with these concepts; they need information and encouragement in order to support Employment First. After many presentations, individual, family and provider advocacy; we found ourselves updating the relevant Medicaid and VR administrative rules. Iowa's new employment service system rules went into effect in 2016.

Partners: Iowa DHS-Iowa Medicaid and Mental Health and Disability Services, Iowa Dept. of Human Rights, DD Council, Disability Rights Iowa, Iowa Vocational Rehabilitation, Iowa Dept. for the Blind, Numerous Iowa Providers, Iowa Coalition for Integrated Employment (ICIE, Iowa's Partnerships in Employment Project)

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Community NOW

Center on Disabilities and Human Development; Moscow, ID

Center on Disabilities and Human Development; Moscow, IDIdaho's initiative is focused on developing an enhanced service system for adults with intellectual/developmental disabilities. "Community Now" is a collaborative workgroup that began in January 2017. It is composed of statewide stakeholders including self-advocates, family members, DD Network partners, Idaho Department of Health and Welfare (DHW), Medicaid, Vocational Rehabilitation, and providers. The workgroup was initially broken into three subgroups to discuss DD services specific to home, community, and work. The goal of each subgroup was to provide recommendations on how to improve services and submit them to the DHW. Once the groups began to meet they realized they were talking about the same kind of quality life measures for each area of service. As a result, the subgroups came up with a combined list of 17 recommendations that were presented to the DHW. The recommendations were then classified into three priority areas, each relying on the others to be optimally effective. The priorities include: 1) Generating a Truly Person-Centered System; 2) Fostering Meaningful Access to the Community; and, 3) Creating and Implementing Quality Assurance Processes. The collaborative workgroup is currently focused on the first priority to establish a quality person-centered planning (PCP) process based on PCP best practice. The group has researched how other states have created and implemented PCP services. They have established a timeline and are currently developing a PCP model for Idaho that includes an implementation plan. Within the next year, the group will develop rules, assess systems impact, and plan training formats. The goal is to have the model approved and in place by July 2020.

Partners: Idaho Council on Developmental Disabilities Disability Right Idaho Center on Disabilities and Human Development Idaho Department of Health and Welfare Idaho Department of Vocational Rehabilitation Idaho adult with disabilities Families of adults with disabilities Community providers

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Addressing Mental Health Services for People with Intellectual and Developmental Disabilities in IL

Institute on Disability and Human Development, University of Illinois at Chicago; Chicago, IL

Institute on Disability and Human Development, University of Illinois at Chicago; Chicago, ILThe Institute on Disability and Human Development (IDHD), University of Illinois at Chicago, has played an important role in providing a needs assessment, evaluating model programs, and making recommendations related to services for people with intellectual and developmental disabilities (IDD) and mental health issues requiring preventive and crisis services. Amie Lulinski, for her dissertation, conducted a needs assessment of the community capacity to serve these dual diagnosed individuals. Her conclusion was that the capacity of these community- based agencies to serve this population was woefully inadequate state-wide. Agencies reported high use of emergency rooms and police for mental health emergencies with little supports for agencies struggling with individuals having behavioral challenges. One outcome was that the state developed a new behavioral support program, the Service Support Teams (SST). The aim of the SST was to increase community capacity to serve this population while controlling the use of and costs associated with hospital admissions, emergency room visits, and pharmacies. This program includes observations of individuals in their environments, training of staff and families, technical assistance to agencies, consultations on behavioral plans and treatments, linkages to services, and short-term respite stays. The IDHD, under the direction of Dr. Tamar Heller, conducted an evaluation of the SST program and worked closely with the Illinois Department of Human Services-Developmental Disabilities (DHS-DD) to develop the data that would be collected on all the participants. The evaluation showed a significant reduction in the number of people with dual diagnosis admitted to the hospital and the total number of admissions to the hospital from the 12 months before to the 12 months after referral to SST. Many of the other outcomes also trended downwards, both for people with and without stays in a SODC. The results demonstrated that the specialized services provided by the program are an effective support option when utilized by persons with a dual diagnosis. Community-based supports focusing on crisis intervention, such as the SST program, are able to help curb hospital and potentially reduce ER use, decreasing health care costs in this area and facilitating the opportunity for persons with a dual diagnosis to remain in the community. The positive outcomes from the use of crisis interventions programs, such as those reported for the SST program, can impact the ability of persons with a dual diagnosis to avoid hospitalization or institutionalization and support their general health outcomes. The SST program, which started in 2010 has continued to expand after the positive evaluation. However, there was one strong limitation in the SST program, which was the use of short-term stays in the state operated developmental centers (SODC). One of the recommendations of the SST evaluation was to develop programs in community based homes that could serve to stabilize individuals in crisis rather than using the SODCs. Hence DHS-DD developed the Short Term Stabilization Homes (SSH which has been rolled out state-wide). Currently, IDHD is evaluating the effectiveness of the SSH program in collaboration with the community agencies that have developed the homes and DHS-DD.

Partners: Illinois Department of Human Services-Developmental Disabilities Envision incorporated (community agency) Illinois Advocacy Group (community agency)

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RCDC LEND Supports Infant Mental Health Practice in Part C

Riley Child Development Center LEND; Indianapolis, IN

Riley Child Development Center LENDIndiana's Part C Coordinator announced this year that early intervention providers are encouraged to earn a special credential in infant mental health. This policy shift comes as the result of a strong and well-established relationship between the Indiana LEND, Riley Child Development Center, and Indiana's Part C program, First Steps. The collaboration between the RCDC LEND and Part C has led to increasing emphasis on the role of infant mental health in services for young children with disabilities and a recognition that reflective practice and consultation can support the providers who perform this sometimes challenging work. The RCDC LEND is pleased to have this formal recognition of Infant Mental Health Endorsement as significant for individual Part C providers' professional development and of benefit to the system as a whole. As home visitors, Part C providers work with families of children less than 3 years who have developmental delays or who are at risk for development delays. This work can be intimate and intense, as the providers must connect with families during a difficult time, as they learn of and begin to address their child's developmental delays. Many families who participate in early intervention have psychosocial risk factors that can be barriers to success. Examples of risk factors include parental mental illness or substance abuse disorders. In other cases, providers are working with children who are involved in child welfare and placed in foster care. Over the years RCDC faculty and trainees have frequently provided training and support to providers to increase their skills in relationship-based and reflective practice. Supporting providers to move beyond their discipline specific training allows them to address barriers to care and to better meet the needs of families. Training and support efforts have included continuing education activities, intensive seminars, and reflective consultation groups delivered through distance means. Most recently, LEND faculty have worked with the Institute on Disability and Community, Indiana's UCEDD, to deliver a series of training experiences specifically intended to increase reflective practice and build leadership capacity in this arena. The infant mental health Endorsement is available in Indiana through the infant mental health association, Infancy Onward. RCDC LEND faculty were instrumental in creating Infancy Onward and in bring the Endorsement to the state as a workforce development initiative that involved several state agencies, including the department of health, child welfare, and mental health. Through these partnerships, the LEND had the opportunity to introduce Part C providers and state officials to value of the infant mental health Endorsement for workforce development. With the announcement of Endorsement as a credential that is encouraged and supported by the Part C program, we anticipate seeing more participation among providers going forward, leading to continued improvement in services and benefits that may include less turn over and burnout among providers as they receive reflective consultation. We look forward to ongoing partnerships with Part C and other state agencies in ways that inform policy.

Partners: LEND faculty UCEDD faculty Indiana Part C Coordinator and staff

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Louisiana Act 3: Early Childhood Care and Education (ECCE)

LSU Human Development Center, New Orleans, LA

LSU Human Development Center, New Orleans, LALouisiana is known for its rich food, music, and culture and, unfortunately, also for its historically poor education and health outcomes for children and families. Recently, faculty of Louisiana's UCEDD, the Human Development Center (HDC) collaborated with policy-makers, legislators, families, advocates, and other early childhood professionals to ensure early childhood systems have the capacity to better prepare children to be healthy and ready to learn. The Louisiana legislature passed the Early Childhood Care and Education (ECCE) Act (Act 3) in 2012. This sweeping legislation reforms ECCE and improves kindergarten readiness by unifying early childhood systems. Goals of Act 3 include: upgrading quality, creating equity, and increasing access. Act 3 created an ECCE Advisory Council to draft and review policies and make recommendations to the State Board of Elementary and Secondary Education. The Superintendent of Education appointed the Director of HDC's Early Childhood initiatives, Ms. Maria Blanco, to the ECCE to represent the interests of children with disabilities and their families. Advocacy by the ECCE and others has resulted in upgraded quality resulting from redesign of the quality rating and improvement system (QRIS) to include evidence-based measures correlated to school readiness and linking QRIS to School Readiness Tax Credits; creating equity for families through a transparent coordinated enrollment system; and increased access by ensuring Pre-K 4 seats are available for all eligible children. This year, the ECCE focused on increasing access by serving more families through the Child Care Assistance (subsidy) Program. Between 2006 and 2013, over 15,000 children lost their subsidy in Louisiana due to narrower eligibility requirements. As a result, many low-income working families lost child care subsidy assistance they relied on to gain access to high quality child care. In 2017, Louisiana broadened eligibility criteria and increased the amount of the subsidy. Louisiana currently supports child care access to over 17,000 children through the subsidy program. HDC's representative on the ECCE continues to advocate for policies that increase access for children with disabilities and families. An important outcome of this advocacy is that Louisiana increased the subsidy rate for children with disabilities by 26% to help cover additional costs associated with effectively including children with disabilities in inclusive early childhood settings. Louisiana also lowered the work requirements for families of children with disabilities to account for families often having to reduce their hours to ensure their child is receiving comprehensive services. We understand that providing additional funding alone will not necessarily upgrade quality and ensure early childhood providers are equipped to effectively include children with disabilities. HDC faculty participated in design and implementation of a state Special Needs Pilot using an evidence-based model to provide intensive coaching to early childhood educators who had a child with disabilities enrolled in their classroom. HDC is currently working with policy-makers and other partners to explore ways to expand this pilot. This work could not have happened without the Policy-making partners in these collaborations include: Louisiana Department of Education, EarlySteps (Part C) and Department of Health, and Louisiana Policy Institute for Children.

Partners: Louisiana Department of Education Louisiana EarlySteps (Part C) Louisiana Department of Health Louisiana Policy Institute for Children

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The ICI Partners with the Massachusetts DDS to Make Employment First a Reality in MA

Institute for Community Inclusion; Boston, MA

Institute for Community Inclusion; Boston, MAIn November 2013, the Massachusetts Department of Developmental Services (DDS), in partnership with the Association of Developmental Disability Providers and The Arc of Massachusetts, issued the Blueprint for Success: Employing People with Intellectual Disabilities in Massachusetts. The Blueprint followed the department's 2010 Employment First policy, and specified timelines for the closure of sheltered workshops and elimination of subminimum wage. The Institute for Community Inclusion (ICI), a University Center for Excellence in Developmental Disabilities, was asked to join with DDS to support the implementation of the Blueprint for Success. As an established leader in the area of employment for individuals with disabilities, the ICI is well positioned to assist DDS in putting the Blueprint into practice. ICI's efforts are focused on provider capacity building and employment and community-based day support policy and practice. The Institute has developed resource materials for DDS and its stakeholders, including Volunteering, Internships, and Unpaid Work Experiences: Legal and Practical Guidelines (Hoff, 2017) and Ensuring Excellence in Community Based Day Supports: A Guide for Service Providers and Staff (Hoff, DiBiase, & Sasnett, 2015). The latter is being used by DDS to guide providers as they develop more inclusive approaches to day supports, and is also guiding the Department's work related to the Home and Community-Based Services Community Rule. ICI has provided technical assistance to both employment and community-based day support providers to assist them in integrating best practices into their services. This assistance has included short-term targeted TA, as well as ongoing TA to support organizational transformation. In 2016, ICI led a statewide conference on employment that over 400 people attended. The Institute has offered a six-day training on employment practices multiple times as part of the state's effort to develop the direct support workforce. Additional training and webinars have focused on transportation, Social Security benefits and work, friendships in the workplace, social media and the job search, natural supports, and visual resumes, as well as a multi-day training on managing employment services. ICI has developed a website,, and disseminates a monthly e-newsletter throughout the state to support the implementation of DDS's Employment First policy. ICI has assisted DDS with grant applications to support the Department's policy directions, and is a lead partner in the Massachusetts Partnership for Transition to Employment, an AIDD project of national significance. The Institute is working with DDS and other partners to support systems change and practice innovation that will lead to improved employment outcomes for young people with IDD. Since the launch of the Blueprint, Massachusetts has closed sheltered workshops and significantly decreased the use of subminimum wage. Employment outcomes are gradually increasing, and day services are providing a broader pathway to employment through a range of community-based experiences that support individuals to learn more about their interests, develop their skills, and consider new opportunities for their futures.

Partner: Massachusetts Department of Developmental Services

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The Institute for Community Inclusion, UMass Boston, (Think College) Changes Massachusetts Higher Ed

The Institute for Community Inclusion, UMass Boston, Children's Hospital; Boston, MA

The Institute for Community Inclusion, UMass Boston, Children's Hospital; Boston, MAThe Institute for Community Inclusion (ICI) at the University of Massachusetts Boston, a University Center for Excellence in Developmental Disabilities, is a national leader in supporting students with intellectual and/or developmental disabilities (I/DD) to access postsecondary education. The ICI is home to Think College (, a national organization dedicated to developing, expanding, and improving higher education options for people with I/DD. Think College performs research, guides institutional change, and informs public policy, while engaging with students, professionals, and families. On its recently redesigned website, Think College hosts a college search database, allowing users to compare over 260 college programs for students with I/DD. The website also hosts the Innovation Exchange, offering high-quality research and resources related to inclusive postsecondary education. In 2007, to extend the work of Think College, the ICI approached members of the Massachusetts legislature with a budget proposal to provide funding for including students with I/DD in public colleges and universities throughout the state. The proposal was funded by the legislature and signed into law by the governor. This was the first publicly funded model of including students with I/DD in the country. As a result of this effort, more than 1,200 students with I/DD have been able to attend public colleges in Massachusetts. There has been continued cooperation with and leadership from the ICI in conjunction with the Massachusetts legislature, the governor, the Department of Higher Education, and the Department of Elementary and Secondary Education. The results have been outstanding as the students' lives and attitudes have been transformed. In addition to feeling more independent and socializing with their same-age peers, their rates of employment on graduation are many times greater than those of students who did not have this college experience. Students take one or two classes a semester, sometimes for credit and sometimes through auditing a course. They receive travel training and a work experience. They participate in college activities, and become an integral part of their campus. Two years ago, some students began living in the college dorms. Because of this success, the colleges have been able to include not only students with I/DD, but other students with learning differences. This effort has been enthusiastically supported by college faculty and administrators, who cite improved teaching methods and a high degree of engagement of typical (non-disabled) students, as well as students with I/DD. This has been a tremendous success story, and illustrates the ICI's fruitful collaboration with state government, higher education, and students.

Partners: Massachusetts Legislature Massachusetts Governor Massachusetts Department of Higher Education Massachusetts Department of Elementary and Secondary Education

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Health Insurance Coverage for People with Autism Spectrum Disorder

UMass Medical School / E.K. Shriver Center; Worcester, MA

UMass Medical School / E.K. Shriver Center; Worcester, MAIn 2011 Massachusetts enacted one of the strongest and most comprehensive autism insurance laws in the country. The law, entitled An Act Relative to Insurance Coverage for Autism (ARICA), was conceived of and spearheaded by Amy Weinstock, a former Shriver Center LEND fellow and now faculty member. Following passage of the law, Ms. Weinstock established the Autism Insurance Resource Center (AIRC) at the Shriver Center in order to work on the implementation of the law. The AIRC provides assistance to families and caregivers to access and utilize the appropriate health insurance for the needs of children and adults on the autism spectrum. AIRC also provides assistance to providers, employers, and clinicians on issues related to medical insurance for autism treatment, and has partnered with multiple private and state agencies to advocate and educate on behalf of people with autism and their families. Since its inceptions the AIRC has served thousands of families, has provided training and technical assistance to hundreds of agencies and organizations, and has played a major role in effecting changes in numerous private companies' insurance coverage policies. The AIRC is the only center of its kind in the United States and provides consultation and technical assistance to other states to establish similar resources. The AIRC has won numerous awards for its pioneering vision, for the direct, tangible help it has provided to individuals and families, and for the monumental policy changes it has help bring about in the state of Massachusetts.

Partners: Barbara L'Italien, Mass state senator; the Executive Office of Health & Human Services; the Departments of Developmental Services and Public Health; the Mass Developmental Disabilities Council; the Flutie Foundation; the Nancy Lurie Marks Foundation

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Maine Policy Project on Restraint and Seclusion

Center for Community Inclusion & Disability Studies, UCEDD; Orono, ME

Center for Community Inclusion & Disability Studies, UCEDD; Orono, MEWhen her son experienced a challenging transition to public kindergarten from a special purpose private pre-school and was restrained on the playground three weeks into his kindergarten school-year, Deb Davis, parent of a child with developmental disabilities, took on a leadership role to help reduce and prevent incidents of restraint and seclusion (R&S) in Maine schools. In 2011, Ms. Davis was invited by the Maine Commissioner of Education to serve on the Consensus Based Rule-making Team that was revising the rule governing the use of physical restraint and seclusion. With oversight from the Maine Department of Education (MDOE), a R&S Stakeholder Group that included parents, school personnel, service providers, and DD Network partners was convened to rewrite MDOE rules on the use of restraint and seclusion of students, known as Chapter 33: Rule Governing Physical Restraint and Seclusion (

The Chapter 33 rule, rewritten by the R&S Stakeholder Group, established permitted and prohibited uses of restraint and seclusion, required notification and documentation of incidents of restraint or seclusion, aggregate reporting of incidents to administrators and to the MDOE, notification to parents, response to multiple incidents of restraint or seclusion of a student, local and state complaint processes, and MDOE approval of training programs. This important work continued in 2013 when stakeholder group members successfully testified before the Maine legislature to prevent passage of a resolve to direct the MDOE to amend its rules regarding restraint of students as currently written.

Ms. Davis was later approached by the MDOE to create a Best Practices Guide to Reduce and Prevent the Use of Restraint and Seclusion in Maine Schools, some of which appears as a resource on the MDOE restraint and seclusion website. She and the R&S Stakeholder Group, and a new group known as the Maine Coalition Against Restraint and Seclusion (ME CARS), continue to serve as a resource on Chapter 33 for parents, state department personnel, and policymakers.

Last fall, 2017-2018 NH-ME LEND Family Trainee, Jodie Hall, began a community leadership field placement with Deb Davis to plan and develop effective and engaging outreach materials to help parents understand their rights, the rights of their children, and the Chapter 33 rule.

The four goals of this outreach:

  1. educate parents about the permitted and prohibited uses of restraint and seclusion; 
  2. encourage parents to work collaboratively with schools to ensure their child's behavior is being appropriately understood; 
  3. reduce the number of restraint and seclusion incidents by educating parents and schools about preventative strategies and measures; and 
  4. once a restraint and seclusion incident has occurred, provide the families with sufficient information to engage in the debriefing process with the school and make the necessary adjustments to prevent restraint and seclusion from occurring again.


To accomplish this, Hall and Davis are co-producing a series of seven short videos of two parents having unscripted conversations about topics pertaining to restraint and seclusion and Chapter 33. They hope to publish the video series online by May 2018.

Partners: Deb Davis, Non-Attorney Education Advocate and Parent; Jodie Hall, NH-ME LEND Family Trainee and Parent; Center for Community Inclusion and Disability Studies, UCEDD, University of Maine; Disability Rights Maine; Maine Developmental Disabilities Council; Maine Parent Federation; Autism Society of Maine; Maine Department of Education; ME CARS (Coalition Against R&S); R&S Stakeholder Group

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Alcohol Warning Signs: Preventing Fetal Alcohol Spectrum Disorders

Michigan Developmental Disabilities Institute; Detroit, MI

Michigan Developmental Disabilities Institute; Detroit, MIIn 2011, the Michigan Developmental Disabilities Institute (MI-DDI) was asked to coordinate and support the activities of the Michigan Fetal Alcohol Spectrum Disorders (FASD) Task Force. The Task Force is a collaboration of self-advocates, family members, disability researchers, service providers, and policy makers who come together to address FASD through increasing awareness, prevention, and access to services and supports. According to the most recent study by a group of expert FASD researchers, the prevalence of FASD is 1 in 20 elementary school children1. One of the Task Force members, Juline Lloyd, is a strong proponent of placing alcohol warning signs in point of sale locations such as bars, restaurants, and stores where alcohol is sold. Juline brought research data to the Task Force concerning the effectiveness of signage and language used by other states. She also arranged a meeting with one of Michigan's state representatives, Hank Vaupel, who has an interest in FASD. Juline also arranged for an interview by Cynthia Canty of Michigan Public Radio where Juline and Ann Carrellas from MI-DDI discussed the impact of FASD on individuals, families, and our communities, prevalence rates, and supports and services.

In November 2017, a small group of Task Force members including Ann, Emily Rusnak from the Michigan Coalition on Fetal Alcohol Resources, Education and Support (MCFARES) (Michigan's local chapter of the National Organization on Fetal Alcohol Syndrome (NOFAS), and Mike Tobias of the Michigan Coalition to Reduce Underage Drinking and the Prevention Network met with Representative Vaupel. The Task Force discussed introducing legislation to require point of sale signs that address the lifetime impact of prenatal alcohol exposure in terms of disabilities in the neurological, learning, physical, social and emotional realms of development. Ann Carrellas along with several parents developed a packet of talking points, research on the effectiveness of signage, and examples of other states' legislation and sign language which was shared at this meeting. As a result of this meeting, Representative Vaupel is introducing alcohol point of sale signage legislation this month (February, 2018) and hoping to fast track it. Juline Lloyd has taken the lead on keeping the momentum going by keeping in touch with Representative Vaupel's office and keeping Task Force members up to date. When the legislation is introduced, MCFARES and other advocacy groups will receive the talking points to share with their local legislators and encourage passage. Additionally, Mike Tobias is helping members of the Task Force understand what alcohol sellers and buyers' groups should be contacted for their support as well.

1May, P. A, Chambers, C.D., Kalberg, W. O., Zellner, J., Feldman, H., Buckley, D....Hoyme, H.E. (2018). Prevalence of fetal alcohol spectrum disorders in 4 US communities. Journal of the American Medical Association, 319(5), 474-482. doi: 10.1001/jama.2017.21896

Partners: Juline LLoyd, Michigan FASD Task Force Emily Rusnak, Michigan Coalition on Fetal Alcohol Resources, Education and Support (MCFARES) (Michigan's local chapter of the National Organization on Fetal Alcohol Syndrome (NOFAS) Mike Tobias, Michigan Coalition to Reduce Underage Drinking and the Prevention Network Representative Hank Vaupel, Michigan House of Representatives, Chair of Committee on Health Policy Ann Carrellas, Associate Director of Research, Michigan Developmental Disabilities Institute

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Improving Graduation Rates in Minnesota for Black and American Indian Students with Disabilities

Institute on Community Integration; Minneapolis, MN

Institute on Community Integration; Minneapolis, MNThis five-year partnership between the Minnesota Department of Education and the Institute on Community Integration (ICI) began in September 2016. The project's goal is to ensure a comprehensive approach that leads to increasing graduation rates for Black and American Indian students with disabilities in four Minnesota school districts: Minneapolis, St. Paul, Duluth, and Osseo. This will fulfill Minnesota's State-Identified Measurable Result, a requirement of the Office of Special Education Programs, U.S. Department of Education. This project uses the Check & Connect model developed at ICI. Check & Connect is a comprehensive intervention developed at the Institute that is designed to enhance student engagement in school and with learning for marginalized, disengaged students in grades K-12 through relationship building, problem solving, capacity building, and persistence. In this project, Check & Connect serves as a targeted or intensive intervention that complements MDE's Multi-Tiered System of Support (MTSS), coordinating and collaborating with existing practices and supports such as response to intervention (RtI) and positive behavioral interventions and supports (PBIS). The project is working to improve graduation rates in Minnesota for Black and American Indian students with disabilities by:

  1. Implementing, via a ""Train-the-Coach"" model, Check & Connect: A Comprehensive Student Engagement Intervention 
  2. Facilitating state- and district-wide Implementation Teams to ensure a comprehensive approach to Check & Connect implementation (e.g., Response to Intervention, Positive Behavioral Interventions and Supports) 
  3. Providing coaching and technical assistance to ensure implementation fidelity and sustainability, and
  4. Providing formative and summative evaluation information to the Minnesota Department of Education (MDE) and its local districts on the implementation of Check & Connect.

For the past 1 ½ years a Check & Connect national trainer has provided initial training for district and school leadership teams as well as staff members who are serving in the role of Check & Connect Mentor. The Check & Connect national trainer has also worked closely with district and school level teams, coaching them through the implementation process. Through these processes, district capacity is being developed for implementing and sustaining an evidence-based intervention for meeting the needs of students with disabilities.

Partners: Minnesota Department of Education Minneapolis Public Schools St. Paul Public Schools Osseo Public Schools Duluth Public Schools

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The Missouri Disability and Health Collaborative

University of Missouri Kansas City, Institute for Human Development; Kansas City, MO

University of Missouri Kansas City, Institute for Human Development; Kansas City, MOThe Missouri Disability and Health Collaborative (MDHC) is an effort to make public health programming in Missouri accessible and inclusive. It is guided by an advisory group that includes individuals with IDD, family members, and professionals in the public health and DD service fields. This project began with a comprehensive, three-phase state needs assessment. Phase 1 consisted of a comprehensive literature review that identified common barriers to promoting nutrition and exercise programs for people with ID, with special attention given to methods for overcoming barriers to participation. Phase 2 was a community-based systems modeling aimed at gaining insight into the conceptual and causal relationships community members attribute to policies and practices that impact participation of individuals with ID in public health nutrition and physical activity programs. Finally, the collaborators used the Community Health Inclusion Index (CHII) Organizational Assessment to collect data from county and municipal public health organizations that receive funding from/participate in Bureau of Community Health and Wellness public health programs. Five key findings emerged out of the needs assessment:

  1. Relationships are important for people with ID. Many need family or staff to go with them to community events. Programs should allow a support person to accompany an individual and should recognize the importance of meeting that person's needs, too. 
  2. Materials must be accessible. People with ID cannot benefit from health promotion activities if they have trouble understanding the materials or concepts. Universal Design for Learning offers principles to make materials usable for all audiences. 
  3. Public health staff need training. Public health staff must have the knowledge and resources to include people with IDD. Training can help address barriers to access. 
  4. Outreach strategies influence participation. People with IDD often do not know about healthy lifestyle resources. Best practices include targeting family and staff, using inclusive imagery, and asking the community where to place information. 
  5. Public health agencies across Missouri have a high level of interest in accessibility and inclusion. Needs assessment data indicate strong interest in accessibility and inclusion.

Based on these findings, the MDHC is now engaging multiple statewide partners to review specific public health programming strategies. Workgroups are reviewing existing toolkits used by local public health agencies. Using best practices for Universal Design and Universal Design for Learning, the workgroups will suggest additions or revisions related to:

  • The wording, layout, and imagery of the toolkit and strategy materials 
  • Outreach to ensure that people with ID, support staff, and families are aware of the strategies/programs 
  • Participation of people with disability, disability professionals, and/or family members on advisory boards, committees, or other entities guiding the development implementation, and evaluation of each public health strategy

Each workgroup will submit a draft of recommended changes to their assigned toolkit. The three toolkits that are currently being reviewed include: Worksite Wellness, Livable Streets, and Stock Healthy Shop Healthy.

Partners: University of Missouri Kansas City, Institute for Human Development (UCEDD) Missouri Department of Health and Senior Services Missouri Family-to-Family Governor's Council on Disability Missouri Bureau of Special Health Care Needs AARP of Missouri People First of Missouri Special Olympics of Missouri Missouri Council on Activity and Nutrition Missouri TASH Arc of St. Louis Missouri Developmental Disabilities Council Missouri Adult Brain Injury Unit Developmental Center of Ozarks EITAS-Developmental Disability Services of Jackson County

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Mississippi Competitive Employment Act

Institute for Disability Studies; Hattiesburg, MS

Institute for Disability Studies; Hattiesburg, MSIn response to collaborative efforts of the Mississippi Partnerships for Employment (MSPE), a joint project between the Mississippi Council on Developmental Disabilities, The University of Southern Mississippi Institute for Disability Studies (IDS), and Disability Rights Mississippi, Governor Phil Bryant signed Executive Order 1335 which reestablished a Disability Resource Commission in the state on January 14, 2014. Though this Commission has not yet been fully activated and the MSPE Project ended in 2016, members of the state DD Network, led by IDS, continue to push for all appointments to be finalized so the Commission can become fully operational and Employment First initiatives can be implemented in the state.

Partners: Mississippi Council on Developmental Disabilities, University of Southern Mississippi Institute for Disability Studies, Disability Rights Mississippi, Mississippi Department of Rehabilitation Services, Mississippi Department of Mental Health Bureau of Intellectual and Developmental Disabilities, Mississippi Department of Employment Security, Mississippi Department of Education, Mississippi Division of Medicaid, Mississippi Chapter of the Association of People Supporting Employment First

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Montana's Advocacy Coalition Combats Drastic State Budget Cuts

Rural Institute; Missoula MT

Rural Institute; Missoula MTThe state of Montana has made drastic cuts to disability services and health related programs for FY18 and FY19. The budget cuts are due to large deficits in expected tax revenue. The state fund cuts are approximately $95 M over two years and do not include the lost Federal FMAP available to the state. Unfortunately, human services programs are feeling the brunt of the economic downturn. This comes on the heels of the 2015 state legislated mandate to close the state institution for people with intellectual and developmental disabilities. Of the nearly 60 who were residing at the Institution (Montana Developmental Center or MDC) in 2015, less than 20 remain. Those who have transitioned into the community are doing very well, generally, in spite of the fact that community services are beginning to dwindle around them. A group of advocacy organization heads have joined to better understand the implications of the cuts, determine issues and/or metrics to track as cuts are implemented, and to gather information and 'advocacy strength' to prepare for the next legislative session in winter 2019. We are unable to stave off the current cuts, but we can understand their impact and prepare to tell the story clearly when legislators meet again to develop their next state budget. The leader of the coalition is also a state Senator and a co-chair of the Joint Committee on Children and Families. The advocacy coalition is working closely with the Senator and legislative analysts to accomplish the group's task. It is a work in progress with outcomes not available for another 6-12 months.

Partners: The Arc of Montana The Rural Institute for Inclusive Communities (UCEDD) Montana Council on Developmental Disabilities (MTCDD) Disability Rights Montana (P&A) Parents Let's Unite for Kids (PLUK--OSEP-funded parent training and information center) NAMI-Montana Montana Independent Living Project

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NC General Assembly to Consider Recommendations to Address Employment and ...

NC General Assembly to Consider Recommendations to Address Employment and Postsecondary Education for Students with Intellectual and Other Disabilities

Carolina Institute for Developmental DisabilitiesCarolina Institute for Developmental Disabilities, University of North Carolina; Chapel Hill, NC

In 2015 the North Carolina General Assembly (NCGA) passed State Law 2015-241, Employment and Postsecondary Education for Students with Intellectual and other Disabilities. Though the bill was unfunded, it created a legislative study group and requested a process to learn about the issues and consider a set of recommendations. The CIDD was represented as part of the 40+ member advisory committee that collaborated to develop recommendations. Holly Riddle, policy adviser with NC Division of Mental Health/Developmental Disabilities/Substance Abuse Services (NC DMH/DD/SAS), facilitated the process to

  1. Assess gaps and system needs to support transitions of people with disabilities to adulthood.
  2. Develop a program and fiscal policies to expand and sustain PSE and employment opportunities for people with disabilities.
  3. Plan and implement approaches to public awareness about PSE and employment for people with disabilities.
  4. Plan and implement joint policies and common data indicators for tracking outcomes after people with disabilities leave high school.
  5. Consider options for technology to link agency databases.

The CIDD created and facilitates the North Carolina Postsecondary Education Alliance. This stakeholder group of approximately 150 explored key issues and crafted a set of recommendations that was submitted to the SL 2015-241 advisory committee, and incorporated into the final document to be reviewed by the NCGA. The final report with recommendations was submitted November 2017.

Partners: NC DMH/DD/SAS, NC Council on Developmental Disabilities, Disability Rights NC, NC Division of Vocational Rehabilitation, NC Department of Public Instruction, Centers for Independent Living, NC Community College System, NC Department of Treasury for ABLE, Local Management Entities-Managed Care Organizations (LME-MCO), Exceptional Children Assistance Center, NC Business Leadership Network, University of North Carolina

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The Boggs Center: Fostering Systems Change in New Jersey through Influencing Public Policy

The Boggs Center on Developmental Disabilities, Rugters Robert Wood Johnson Medical SchoolThe Boggs Center on Developmental Disabilities, Rugters Robert Wood Johnson Medical School; New Brunswick, NJ

The Boggs Center, since its inception in 1983 has partnered with state agencies to influence state systems, service delivery, and policy. The following describes a few key efforts that has impacted the way supports and services are provided across the state.

Cultivating Innovation - Since 1984, the Boggs Center's Developmental Disabilities Lecture Series has provided a unique venue for bringing national leaders in the field of developmental disabilities including members of the AUCD network to New Jersey. The DDLS creates common ground for sharing new information, collaborative problem solving, and a forum for the development and refinement of state policy. The series has contributed to the adoption of person-centered planning; presented strategies to improve the direct support workforce; introduced supported decision making; lead to the implementation of a Project SEARCH; supported a trend toward competitive integrated employment; reinforced progressive positive behavior support strategies; created the impetus to infuse CQL's Personal Outcome Measures across systems change initiatives; and instigated efforts around many other topics.

Influencing Medicaid Policy and Service Delivery - The Boggs Center has contributed by providing technical assistance and training and developing and disseminating materials tailored to the current and emerging needs of the state. By working in collaboration with DDD, other state agencies, people with disabilities, families, and providers, the Boggs Center provides a forum for exploring issues and finding common solutions to the challenges faced by the developmental disabilities system. Dr. Deborah Spitalnik, Executive Director of the Boggs Center serves as chair of the state's Medical Assistance Advisory Council (MAAC), advising Medicaid in health services and Long-Term services and supports, fostering communication with the public, and ensuring opportunities for stakeholder input. The Boggs Center has brought the voice of people with developmental disabilities and families to the forefront and influenced Medicaid policy for service recipients across the lifespan.

Educating and Empowering Stakeholders - As the service system evolves, the Boggs Center has worked to infuse best practice through the provision of technical assistance and training to a variety of stakeholders. Efforts address topics including: positive behavior support; supporting individuals with dual diagnosis; supports coordination and person-centered planning; competitive employment; meaningful day; frontline supervision; and professional development for direct support professionals. As part of these efforts, the Boggs Center developed a widely distributed and revered series of materials to help people with disabilities and families navigate the complex and changing service system. The Making Choices, Becoming Empowered Series provides people with information helpful to selecting a support coordination agency, service provider, and/or behavior support provider. The Boggs Centered also developed three guides to educate people with disabilities and families about rights extended through the Home and Community Based Services (HCBS) Final Rule. These documents have been shared with people with disabilities and their supporters across New Jersey in effort to provide them the information they need to effectively advocate for the integrated community services they want and need.

Partners: - Self-Advocates and members of the Boggs Center Consumer Advisory Council - NJ Dept. of Human Services - Division of Developmental Disabilities and Division of Medical Assistance and Health Services (Medicaid) - HCBS Advocacy national leaders (Alison Barkoff [CPR] Kim Musheno [formerly of AUCD], Christine Grosso [AUCD], Julia Bascom [ASAN]) - The Council on Quality and Leadership (Mary Kay Rizzolo)

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Nevada Learn the Signs. Act Early State Team

NvLEND/Nevada Center for Excellence in Disabilities; Reno, NV

NvLEND/Nevada Center for Excellence in DisabilitiesThe Nevada Learn the Signs. Act Early (NvLTSAE) state team supported by NvLEND and the Nevada Center for Excellence in Disabilities has organized an annual Act Early State Summit for six consecutive years. The significance is the gathering of individuals from state and public agencies, parents, parent organizations, and university personnel across the state. The team has planned, developed, and maintained activities related to education and interventions for children with autism and other neurodevelopmental disabilities. Activities include:

  1. Printing and distribution of 150,000 CDC Milestones Moments Booklets adapted to Nevada. Booklets have been distributed through early intervention, home visiting, visiting nurses, state and county social workers, Quality Rating & Improvement System trainings, Nevada WIC, and placed in every newborn packet provided to parents;
  2. The development of educational online video modules for early childhood educators to obtain free continuing education units. Some topics include Autism Spectrum Disorder, inclusion, developmental monitoring, developmental screening, challenging behaviors, talking to parents regarding concerns about development. Currently 1,290 childcare workers have accessed the trainings;
  3. Individuals who regularly participate on the Act Early Steering Committee also participate in other state initiatives such as the Autism Commission, State of Nevada Division of Child & Family Services Mental Health Consortiums;
  4. Training of 55 professionals in multidisciplinary teams across the state to conduct evaluation with the Autism Diagnostic Observation Schedule to identify children with Autism Spectrum Disorder. Programs include early intervention and school districts; and
  5. The annual Act Early Summit has brought in speakers from across the country from various organizations such as Autism Speaks, the Centers for Disease Control and Prevention, AUCD, and other Learn the Signs state programs.

Typically, there are approximately 60-75 individuals who meet on an annual basis. The NvLTSAE State Team has provided a platform for individuals from different agencies to not only learn what is occurring across the country but has also been instrumental in developing a cohesiveness around issues related to neurodevelopmental disabilities. The Summit has speakers from state agencies who report work in state agencies conducted on an annual basis with issues such as Medicaid, number of children receiving services through the state autism program, number of children served and screened through early intervention, and other programs developed by the Maternal and Child Health Program such as the newly developed program Nevada Medical Home Portal. The consistency of the summit has kept individuals in these agencies be accountable in their work and has been a conduit for communication between agencies. It has helped to highlight the work being done in the state, which is important for morale for individuals working in state agencies. In summary, the NvLTSAE State Teams has been a galvanizing force to bring individuals from a variety of backgrounds across the state in working with children with neurodevelopmental disabilities their families. It has been a guiding force to help make changes in various programs in state agencies, which includes education, training, and intervention of professionals and the public at large.


  1. State of Nevada Maternal & Child Health Program

  2. State of Nevada Autism Treatment Assistance Program

  3. Nevada Early Intervention Services

  4. Grant-a-Gift Autism Foundation

  5. Nevada Department of Education

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Rose Kennedy UCEDD Joins with Coalitions in NYS to Fight for a Living Wage for Direct Support Staff

Rose F Kennedy UCEDD; Bronx, NY

Rose F Kennedy UCEDDIn NYS support for a living wage for Direct Support Staff is a major problem. They provide hands on care that keep people with IDD safe, healthy and part of their communities. Direct support staff help with hygiene, administer medication, teach basic life skills. They are trained and must achieve high performance expectations from all levels of government. Yet, their salaries hover at minimum wage near the federal poverty level. Many direct support staff are leaving or those that stay must work 2 or even 3 jobs to make ends meet. Direct support positions are not minimum wage jobs. We support a living wage for Direct Support Staff! #bFair2DirectCare

Partners: Bronx DD Council and the NYC Borough-wide DD Councils IACNYC -Interagency Council of New York COPA - Council of Provider Agencies DDAWNY - Developmental Disability Alliance of Western New York NYSARC

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A Prominent Role in NYS Education Policy

Westchester Institute for Human Development; Valhalla, NY

Westchester Institute for Human DevelopmentWIHD has increased its role in NYS special education policy issues since 2009 when Naomi Brickel joined the organization to develop and direct its New York State Education Department (NYSED) funded Special Education Parent Center. As a parent, former Board of Education member, leader in the statewide network of parent centers, recognized expert in the areas of student and family engagement and post-secondary transition, and member of the New York's Commissioner's Advisory Panel for Special Education and other NYSED workgroups, she is consulted frequently to offer insight and perspective on new initiatives or policy pertaining to students with disabilities (SWDs). She has also developed a team in WIHD's Community Support Network (CSN) that is recognized and called upon for their expertise and passion in the areas of preschool and school age inclusion, and outreach to culturally and linguistically diverse families. Over the past several years, New York has undergone significant changes to its graduation requirements. Naomi has been vocal in advocating for diploma accessibility (NYS maintains high stakes testing requirements for graduation) while preserving high standards for SWDs. She has submitted comment on this issue, spoken in public forums, and consulted privately and in groups with state policy makers. She was a member of the NYSED ESSA stakeholder advisory group for the development of its state plan, where she brought attention through submitted and public comment to the issue of accountability for SWDS, in a state where low state assessment participation rates resulting from the ‘opt-out' movement has compromised subgroup accountability. She is also currently appointed to a NYSED workgroup analyzing root causes and proposing solutions to address the NYS's non-compliance with IDEA Indicator 5 targets pertaining to least restrictive environment (LRE). Stephanie Bellantoni, a parent, attorney, former LEND trainee, and staunch advocate for inclusion, is the only parent member of NYSED's Alternate Assessment Advisory Panel. Lulu Bencosme, respected in the state for her work with school districts to engage families of English Language Learners (ELLS), was invited by NYSED to present at the "Next Generation Learning Standards" conferences across the state (the first in November had 1300 attendees) on strategies to reach underrepresented families, and was recently appointed to NYS's State Systemic Improvement Plan (SSIP) Implementation Design Team. Suzanne Peretz, Director of the the CSN's Early Childhood Direction Center (also funded by NYSED) is appointed to the NYS SSIP State Leadership Team, and also serves on a NYS Early Intervention Coordinating Council Early Social-Emotional Guidance workgroup. The state advocacy efforts of the CSN at WIHD are rooted in personal and professional experience (from the thousands of families and professionals they assist) - and passion. In a state where few people understand complex regulatory requirements pertaining to student exit, LRE, and ELLS who are SWDs, their voices and viewpoints are critical, and oftentimes unique. A collaborative approach and respected expertise has enabled the CSN team at WIHD to have a significant impact on policy impacting SWDs in New York State.

Partners: NYSED DOH Other Parents Students Educators State legislators

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New York UCEDDs Collaborate on State Practice Guidelines for Young Children with ASD

New York UCEDDs Collaborate on State Practice Guidelines for Young Children with Autism Spectrum Disorder

Westchester Institute for Human Development; Valhalla, NY

From 2013 to 2016 I was part of a New York State panel of experts to update the NYS Department of Health Early Intervention Bureau's (EIB) Clinical Practice Guidelines for Autism Spectrum Disorder, Birth-to-Three. The Assistant Director of the EIB assembled a panel of academic/clinical experts from around New York State. Representatives of each of the three New York UCEDDs were included on the panel. Six of us completed evidence-based reviews of research addressing screening, assessment, intervention, and medical management of infants and toddlers with ASD. I worked on the screening and assessment portions of this literature review. At our panel meetings in Albany, the reviewers such as myself presented findings and led the discussion to generate updated recommendations in these practice areas. This process occurred over about 18 months. I continued on with an extended contract to assistant with organization and writing of the final document. It can be viewed on the New York State government website at

Partners: New York State Department of Health Early Intervention Bureau; WIHD; U of Rochester UCEDD; Rose F Kennedy/Albert Einstein/Montefiore UCEDD

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Advocacy, Education, and Relationships: UCCEDD's Increased Impact on Ohio's Disability Policy

University of Cincinnati Center for Excellence in Developmental Disabilities (UCCEDD); Cincinnati, OH

University of Cincinnati Center for Excellence in Developmental Disabilities (UCCEDD)UCCEDD has escalated our involvement in state policy significantly in the last year. We've developed and built upon relationships with staffers, representatives, and collaborating organizations to receive regular updates related to policy development and negotiations on a growing number of disability-related policies. Currently, we regularly track between 10-15 state policies. UCCEDD is actively involved in advocacy related to the majority of the policies we track. UCCEDD identifies self-advocates, family members, and professionals who may have a particular interest in specific policies, then support these advocates to gain the knowledge and skills necessary to practice advocacy in the form of testimony, information dissemination, and/or visits with policy makers. Our increased involvement in state policy has expanded our reach and connection with advocates. A few months ago, a group of self-advocates connected to Ohio's ADAPT chapter identified a need for more up-to-date information on state disability policy. The advocates knew how to find basic information on the Ohio Legislative websites but much of that information is posted retrospectively. Hearings are often scheduled only a few days before they take place and finding the information necessary to effectively advocate can be difficult. One advocate explained, "With such little notice, I can't usually arrange transportation or PCAs to allow me to testify in person. I know there are other ways I can contribute but it sometimes feels like you have to know someone to find out what's going on." Our policy team can relate. By building upon our relationships at the statehouse, we've increased our flow of knowledge about policy developments. We wanted to share this information directly with advocates so UCCEDD invited other Ohio DD Network partners to collaborate on a monthly conference call to review current policies, answer questions, and discuss potential strategies for advocacy. Cincinnati LEND trainees have also contributed to the increased activity in disability state policy. Self-advocate trainee, Rachel Rice, has contributed to the development of fact sheets for LEND trainees to learn about Ohio issues (i.e. a bill that would allow wheelchair-accessible taxi cabs to be licensed in Ohio and a bill to prohibit discrimination on the basis of disability in organ transplantation). The policy briefs and talking points are universally designed and intended to be accessible to professionals, individuals with disabilities, and their family members. The briefs will be disseminated in preparation for this year's DD Advocacy Day. Role play sessions prior to the event will allow trainees and UCCEDD faculty and staff to practice strategies to deliver talking points during representative visits. With multiple initiatives aimed to increase involvement in state policy, UCCEDD is also evaluating our effectiveness in these activities. At the start of the LEND year, trainees were surveyed on their policy knowledge and involvement. A post-survey will follow. In addition to tracking advocacy activity, UCCEDD is also documenting the outcome of policies in relation to the position of advocates involved in advocacy. We'll review these outcomes to continue improving upon our strategies in increase advocacy in state disability policy.

Partners: Ohio DD Network Partners: Disability Rights Ohio, Ohio Developmental Disabilities Council, and the Nisonger Center

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Oklahoma Autism Insurance Reform Initiative

OUHSC Section of Developmental & Behavioral Pediatrics; Oklahoma City, OK

OUHSC Section of Developmental & Behavioral PediatricsIn 2016, Oklahoma became the 44th state to pass impactful autism insurance reform. House Bill 2962 was sponsored by Representative Jason Nelson and Senator A.J. Griffin and had broad, bipartisan support. It came to fruition through the efforts of many hard-working Oklahoma parent advocates who sought the guidance of Autism Speaks director of state government affairs, Judith Ursitti, along with input and support from OUHSC Developmental & Behavioral Pediatric and OU-Tulsa Child Psychiatry faculty and several community therapists, psychologists, and other advocates across the state. The team met with numerous Oklahoma legislators at all stages to encourage the support and ultimate passage of House Bill 2962. H.B. 2962 requires coverage for the screening, diagnosis, and treatment of autism spectrum disorder when prescribed by a licensed physician or psychologist who determines the care to be medically necessary, including behavioral health treatment such as applied behavioral analysis (up to $25,000 annually). Since its passing, this workforce group has continued to hold periodic calls and meetings to facilitate and improve access to Applied Behavioral Analysis as the law has gone into effect. The partnerships formed during the initial efforts to pass H.B. 2962 have formed a firm foundation to promote continued support for families of children with autism spectrum disorders for many years to come.


  1. Parent advocates lead by Tara Hood, Emily Scott, Michi Medley, and David Bloese
  2. Judith Ursitti, Autism speaks
  3. OU-Tulsa Child Psychiatry Faculty lead by Tara Buck, MD (child psychiatrist)
  4. OUHSC Developmental & Behavioral Pediatrics Faculty lead by Ami Bax, MD (developmental & behavioral pediatrician) and Bonnie McBride, PhD, BCBA-D (Director of Oklahoma Autism Center)
  5. Rep. Jason Nelson, Sen. A.J. Griffin, and numerous, supportive legislators
  6. Oklahoma Disability Law Center
  7. Numerous Oklahoma BCBA/ABA therapists, psychologists, other providers, and community family advocates

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Protecting Oregon's Fairview Trust through Legislative Action


OHSU UCEDD/LENDThe UCEDD at OHSU, along with the broader developmental disability community, has engaged in advocacy efforts to restore and protect Oregon's Fairview Trust over the past 5+ years. The Fairview Community Housing Trust Fund was created with the proceeds from the sale of the Fairview Training Center, an Oregon Institution closed in 1999. Interest from the Trust was used to fund home modifications and equipment to help ensure that children and adults with developmental disabilities could continue to live in their family homes and remain a part of their communities. By providing small amounts of funding for physical adaptations and accommodations in family homes, it fulfills a commitment to community‐based living for hundreds of Oregonians with developmental disabilities each year. The funding is most often used for critical home modifications that address health and safety issues. The Oregon legislature has proposed using Fairview Trust Funds during budget shortfalls, and the DD community has fought aggressively against these proposals during several legislative sessions. When a state wide economic downturn occurred in 2010, the State borrowed funds from this trust to assist with other funding gaps, and our governor's budget proposals in 2015 and 2017 both liquidated and dispersed the remaining funds into the Oregon general budget. The UCEDD engaged in advocacy efforts through several activities, including meetings with state and federal legislators, supporting LEND trainees and UCEDD staff to go to the state capitol in Salem to advocate alongside self-advocates and other partners, and creating and disseminating issue briefs. The UCEDD has also used the Fairview Trust as a platform for educating trainees, community members, and legislators about the history of institutionalization in Oregon and the benefits of community living and inclusion. Despite these recurring attempts to reallocate funds from the Fairview Trust, the DD community has stepped up to protect it. The current state of the Fairview trust is that many legislators have committed on the record to Fairview fund being "walled off" from future attempts to use funds to meet budget shortfalls, but the UCEDD and DD community is working for more than a promise. Advocacy is ongoing to protect the trust through legislation.

Partners: Disability Rights Oregon, Oregon Self Advocacy Coalition, Oregon Developmental Disabilities Council, The Oregon Developmental Disability Coalition

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Evolution of Supports for Adults in Rhode Island

Paul V. Sherlock Center on Disabilities; Providence, RI

Paul V. Sherlock Center on DisabilitiesThe Paul V. Sherlock Center (the Rhode Island UCEDD) has played a significant role in the evolution of the Rhode Island systems of support for adults who have developmental disabilities. In the 1970s and 1980s the founding director of the Sherlock Center played a major role in the class action litigation that resulted in the closing of Rhode Island's institution and the development of community services. That relationship has continued through several administrations and paradigm shifts. In 2013 a Consent Decree between the U.S. Department of Justice and the State of Rhode Island specifically named the Sherlock Center to administer a Conversion Institute to assist state agencies and private provider agencies to increase employment opportunities for adolescents and adults. This collaboration has resulted in (a) self-determination training with 400 secondary school students; (b) standards and training curricula for employment specialists and for direct support professionals; (c) comprehensive data activities that measure systems change and employment outcomes; (d) technical assistance to provider agencies re: implementation of employment policies and practices; and (e) review of state policies and regulations to support the systems change. Most recently the Sherlock Center is leading a statewide initiative to redesign services and supports based on principles of person-centered thinking. In collaboration with several stakeholder groups, the Sherlock Center has defined the structural components of a system based on person-centered thinking; has developed a Person-Centered Thinking Guide; is implementing a training curriculum for facilitators; and is conducting a pilot intended to promote person-centered practices and to measure fidelity of implementation, outcomes and life changes experienced by adults and satisfaction. The pilot will inform state policy re: implementation of person-centered services and supports.

Partners: Rhode Island Division of Developmental Disabilities Community Provider Network of Rhode Island Several Provider Organizations

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Dramatic Improvement in Serving Children at Risk for ASD: Presumptive Eligibility in South Carolina

Center for Disability Resources (UCEDD & LEND); Columbia, SC

Center for Disability Resources (UCEDD & LEND)Prior to the development of the South Carolina Act Early Team, only a handful of young children at risk for Autism Spectrum Disorder (ASD) received early intervention from the statewide early intervention program. Primary reasons for this problem were the lack of a practical method for early identification of these children and making them eligible for services. The South Carolina Act Early Team (SC AET) is a local effort that was initiated by the Association of University Centers on Disabilities with initial modest funding from the National Centers for Birth Defects and Developmental Disabilities (CDC) and the Maternal Child Health Bureau (HRSA). Since its inception in 2009, the SC AET has been led by the director of the Center for Disability Resources (UCEDD) and now co-chaired by the co-director of the SC LEND. The SCAET was created to provide focused collaboration among leaders representing professionals, state agencies, universities, healthcare systems, private organizations, and families to improve quality of life for children, youth and adults with ASD and their families. Its specific focus includes implementing policy changes, training and related efforts that result in earlier identification and intervention for young children at risk for ASD. The successful, novel statewide effort developed and implemented by the SC AET and the organizations it represents, aimed to increase early identification of young children at risk for ASD using a two-tiered screening and eligibility process with enhanced quality assessment and interagency policy collaboration and coordination. Policy changes, training and modified state agency practices were accomplished via SC AET planning, collaboration and follow through. Presumptive eligibility, based on a two-tiered screening process was implemented by BabyNet (South Carolina's Part C Early Intervention Program) in collaboration with the lead agency for developmental disability services. This resulted in a five-fold increase in children who became eligible for Early Intensive Behavioral Intervention (EIBI/ABA) without waiting for a diagnosis of ASD, avoiding long waits for diagnostic evaluations. All children were referred for a full developmental/diagnostic evaluation. Only sixteen children (2.5%) were later found not to have ASD from the more comprehensive evaluation. Improvements in early identification and intervention are feasible through collaborative policy change. The SC AET and its key stakeholders committed to improving outcomes for this population used existing tools and methods in new ways to improve early identification of children with ASD and to make available evidence-based intervention services. This example should be replicable in other states that have key stakeholders working collaboratively for the benefit of young children with ASD. A more detailed description is available from an article published in the journal Pediatrics (Rotholz, Kinsman, Lacy & Charles, 2017)

Partners: University of South Carolina, Center for Disability Resources (UCEDD and LEND) Children's Hospital at Greenville Health System (LEND) Medical University of South Carolina SC Department of Disabilities and Special Needs BabyNet (SC Part C Program) Winston's Wish Foundation SC Autism Society Family Connection of South Carolina SC Developmental Disabilities Council SC Department of Health and Human Services (Medicaid) SC Department of Education

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Family Faculty Appointed to Tennessee Council on Autism Spectrum Disorder

Boling Center for Developmental Disabilities; Memphis, TN

Boling Center for Developmental DisabilitiesJenness Roth, M.Ed., Boling Center for Developmental Disabilities family faculty coordinator at the University of Tennessee Health Science Center, was recently appointed to Tennessee Governor Bill Haslam's Tennessee Council on Autism Spectrum Disorder (ASD). Roth will serve a three-year term alongside the heads of a variety of governmental agencies. The purpose of the council is to establish a long-term plan for a system of care for individuals with ASD and their families. The legislation charges the council to assess the current and future impact of ASD on Tennessee residents; assess the availability of programs and services currently provided for early screening, diagnosis, and treatment of ASD; seek additional input and recommendations from stakeholders, including, but not limited to, families, providers, clinicians, institutions of higher education, and those concerned with the health and quality of life for individuals with ASD; develop a comprehensive statewide plan for an integrated system of training, treatment, and services for individuals with ASD; ensure interagency collaboration as the comprehensive statewide system of care for individuals with ASD is developed and implemented; coordinate available resources related to developing and implementing a system of care for individuals with ASD; and coordinate state budget requests related to systems of care for individuals with ASD based on the studies and recommendations of the council.

Partners: Tennessee Autism Summit TN Department of Intellectual and Developmental Disabilities TN Department of Education TN Department of Health Vanderbilt Kennedy Center TN Autism Society

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Changing the Employment Landscape in Tennessee

Vanderbilt Kennedy University Center for Excellence in Developmental Disabilities; Nashville, TN

Vanderbilt Kennedy University Center for Excellence in Developmental DisabilitiesOver the last several years, the Vanderbilt Kennedy University Center for Excellence in Developmental Disabilities has been involved at the state level to improve employment for people with disabilities. This work began through our TennesseeWorks Partnership, a group of more than 50 public and private partners across Tennessee including other members of the Tennessee Developmental Disabilities Network, the UT Boling Center UCEDD, the Tennessee Council on Developmental Disabilities and Disability Rights Tennessee. Among the earliest successes was the signing of the Employment First Executive Order by Gov. Bill Haslam in 2013. The order established the Governor's Employment First Task Force and requested an annual report to the governor. Another early success was retaining age 14 as the beginning of transition planning in Tennessee. Although the Individuals with Disabilities Education Improvement Act had increased the age to 16, Tennessee had not followed suit. When a proposal went to the State Board of Education to increase the age to 16, the TennesseeWorks Partnership organized individuals with disabilities, families, educators, and policymakers to articulate the significance of retaining this earlier starting point for planning. Recognizing college as an important pathway to future careers, we also worked to develop inclusive higher education programs in Tennessee through the Tennessee Alliance for Inclusive Higher Education. When The Arc Tennessee and the Tennessee Disability Coalition proposed legislation to provide students with IDD in inclusive higher education programs the same lottery-funded scholarship that other Tennessee students receive, our Partnership encouraged stakeholders to educate members of the Tennessee Legislature about the elevated employment outcomes graduates of these programs experienced. Tennessee's STEP UP law now supports college students with IDD for up to 4 years of scholarship funding. Our involvement in shaping policies cuts across multiple agencies. We have contributed substantively to developments related to Tennessee's implementation of the Workforce Innovation and Opportunity Act (WIOA). As the state plan was developed by the Tennessee Department of Labor and Workforce Development (the lead agency), the Partnership received updates, offered feedback, and provided many of the working relationships required by the law. We also have worked closely with TennCare-our state's Medicaid agency-to develop and introduce Tennessee's Employment and Community First choices programs. From the beginning of the Partnership, we knew long-term services and supports provided by Medicaid would be key to finding and keeping integrated, competitive employment for Tennesseans with the most significant needs. In 2012, more than7,000 Tennesseans with disabilities were on the waiting list and waiver services were offered only to individuals with an intellectual disability. Managed care programs now have several priority categories, including transitioning youth who want to work, and services have also been expanded to include those with developmental disabilities. At the request of almost every partner, we launched a working committee on supported decision making. Our plans included developing a white paper, educating key groups, and introducing new legislation. We are outlining additional policy and practice recommendations spanning the areas of education, law, health care and community living.

Partners: Tennessee Council on Developmental Disabilities. UT Boling Center UCEDD, Disability Rights Tennessee, TennCare, Tennessee Department of Intellectual and Developmental Disabilities, Tennessee Department of Education, Tennessee Department of Labor and Workforce Developmental, Tennessee Department of Human Services/Division of Vocational Rehabilitation, Tennessee Department of Economic Development, The Tennessee Governor's Office, The Arc Tennessee, Tennessee Inclusive Higher Education Alliance

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Supported Decision Making

Texas Center for Disability Studies; Austin, TX

Texas Center for Disability StudiesTexas was the first state to implement Supported Decision Making Agreements as an option to Guardianship in 2015. During the 84th Texas legislature a collaborative of Texas organizations recommended seven policy proposals to promote alternatives to guardianship and improve protections for individuals under guardianship. These proposals built upon the volunteer supported decision making pilot created by the Texas Legislature in HB 1454 in 2009. The pilot provided adults with intellectual and developmental disabilities with trained volunteers who assisted them in making life decisions and remaining independent. Proposals 3-7 were adopted by the Texas Judicial Council. Supported decision-making is a process of supporting and accommodating an adult with a disability to enable the adult to make life decisions, including decisions related to where the adult wants to live, the services, supports, and medical care the adult wants to receive, whom the adult wants to live with, and where the adult wants to work, without impeding the self-determination of the adult. A Supported Decision-Making Agreement In a supported decision-making agreement the person chooses someone (called a "supporter") they trust to help them get information they need to make an informed decision, consider their options, understand the risks and communicate their decisions to others. The State does not place any restrictions on who may become a supporter. Typically, the supporter may be a family member, relative or friend. But, the adult with a disability may only enter a supported decision-making agreement voluntarily, without being influenced by others. The person and the supporter fill out and sign a legally valid supported decision-making agreement form and have it witnessed or notarized, as required by law. There is a Supported Decision-Making Agreement form in the Texas Estates Code. There is also a simplified form featured on this website. Both are legally valid. The form you use does not have to be exactly like these two forms, but it has to have all of the same information. The simplified version on this website was reviewed by Disability Rights Texas, the state's legal protection and advocacy agency. The agreement does not require attorneys or court filing. It does not allow a supporter to make decisions for the person or act in their place. Both parties keep a copy of the agreement and present it when needed. If they decide to use an attorney, the attorney can keep a copy, too. The agreement can be created at any time. It can also be ended at any time (A) by the person or their supporter, (B) on a date determined at the beginning of the agreement, or (C) by the Texas Department of Family and Protective Services if they find the supporter is abusing, neglecting or exploiting the person being supported.

Partners: AARP ADAPT of Texas The Arc of Texas Autistic Self-Advocate Network Coalition of Texans with Disabilities Disability Rights Texas Down Syndrome Associations of Central Texas Ed Hammer, Ph.D., Texas Tech Health Science Center at Amarillo Hogg Foundation for Mental Health Mental Health America of Texas National Association of Social Workers - Texas Quality Trust for Individuals with Disabilities Texas Advocates Texas Association of Centers for Independent Living Texas Center for Disability Studies Texas Council for Developmental Disabilities Texas Parent to Parent

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Texas Autism Needs Assessment

LoneStar LEND; Houston, TX

LoneStar LENDThrough the Health Resources Services Administration (HRSA) funded State Planning Grant for Improving Services for Children and Youth with Autism Spectrum Disorder and other Developmental Disabilities, Dr. Pauline Filipek assembled the Act Early Texas! Autism Commission. This one-of-a-kind Texas Commission was composed of all 10 Academic Autism Centers in the state of Texas (UTHealth- Houston, UNT- Dallas, UT Southwestern- Dallas, Texas Tech- El Paso, UTSA- San Antonio, Texas A&M- College Station, University of Texas- Austin, Baylor College of Medicine- Houston, University of Houston- Clear Lake, Texas State University- San Marcos). In addition to the academic autism centers, the Commission was also composed of representatives from five state agencies, four Texas Representative and Senator offices, Autism Speaks' national office as well as a host of other community organizations, parents and advocates. Together, the Commission authored and distributed Texas' first comprehensive statewide Autism Needs Assessment in English, Spanish and Vietnamese. The needs assessment aimed to provide an in-depth look into the state of care and services offered to individuals affected by autism and their caregivers within the state of Texas. Equitable and widespread distribution of the survey proved to be an enormous feat given that Texas contains a population greater than 19 of the smallest states combined as well as numerous pockets of rural and sparsely populated areas. However, utilizing the many arms of the Commission, data collection proved to be successful-- the survey garnered 2,084 responses and survey responder's racial, ethnic and socioeconomic demographics closely mirrored state demographics. The survey data is currently being compiled into a report that will be utilized to create recommendations for elected officials and service providers regarding necessary improvements to quality of care and services provided for individuals affected by autism and their caregivers across the state.

Partners: 10 Academic Autism Centers in the state of Texas (UTHealth- Houston, UNT- Dallas, UT Southwestern- Dallas, Texas Tech- El Paso, UTSA- San Antonio, Texas A&M- College Station, University of Texas- Austin, Baylor College of Medicine- Houston, University of Houston- Clear Lake, Texas State University- San Marcos). Representatives from five state agencies (DARS, DHHS, DSHS, HHSC, DARS Autism Program) Senators Kirk Watson & Eddie Lucio offices Representatives Larry Gonzales & John Zerwas offices Dan Unumb & Judith Ursetti from Autism Speaks' national office A host of other community organizations, parents and advocates

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Bringing Assistive Technology Supports to Rural Utah

Utah State University Center for Persons with Disabilities; Logan, UT

Utah State University Center for Persons with DisabilitiesOver its 45-year history, the CPD has been very involved in state-level policymaking. A recent model of success is our Utah Assistive Technology Program which, under the leadership of Sachin Pavithran, was able to secure an ongoing $100,000 appropriation to fund an assistive technology lab and outreach center in the rural eastern part of the state. This new AT lab serves eastern Utah, which includes several American Indian reservations, and many high-need, underserved rural communities. Just over the past two years this AT Lab has made a tremendous difference in the quality of life for people with disabilities and the aging population.

Partners: UATP Director Sachin Pavithran; Utah State Representative Ed Redd; USU College of Education and Human Services Dean Beth Foley; USU Legislative Liaison Neil Abercrombie; USU CPD Interim Executive Director Judith Holt

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Wisconsin UCEDD Works to End Wait Lists for Children with Disabilities

Waisman Center; Madison, WI

Waisman CenterThe Wisconsin UCEDD, located at the University of Wisconsin- Madison, has identified Family Support and Leadership as a priority area for their work. This includes 11 specialty clinics serving children and adults with disabilities, a resource center staffed by social workers and family members helping visitors and callers, a Wisconsin Family Leadership Institute and frequent community trainings to provide families and providers the information they need to support their family members with disabilities. In culmination of years creating better access to supports for children and families, UCEDD staff Elizabeth Hecht, Specialist for Public Policy, was invited to attend Governor Scott Walker's 2017 Budget Address when he introduced his budget proposal for $39 million to eliminate wait lists for children with developmental, physical and emotional disabilities eligible for the Children's HCBS waiver. The WI UCEDD has supported Hecht in her capacity as appointed chair of the Department of Health Services, Council on Children with Long-Term Support Needs. The Council recommendations for the 2017-2019 budget included elimination of the wait for children with significant disabilities, as it had every year since its inception in 2005. The WI legislature passed the budget in July 2017 with support from the Governor and full funding to accomplish this goal. The Council was created with support from the Projects of National Significance grants through AIDD to advance Family Support under Title II of the Developmental Disability Act which helped build the WI family leadership infrastructure that led to this current success. The Council advises the DHS Secretary on budget and policy recommendations to improve supports and services for children with disabilities and their families. A key collaboration that makes our policy engagement successful is our participation as a member of the WI Survival Coalition. The WI UCEDD, along with our P&A and DD Council, partners with the Survival Coalition, a coalition of over 30 statewide disability organizations working together on a wide variety of disability policy topics and activities. Meeting twice a month, UCEDD staff serve as team lead for children's issues, researching policy issues and developing written materials for communication with families, the WI legislature, state administration and the Governor. Governor Walker's budget is a tangible outcome from the UCEDD work to promote and strengthen the participation of families that include a person with disabilities in partnerships with professionals and providers, community members, and elected officials. With their participation in family support and leadership-building activities, families are able to impact the improvement of systems of supports and service for people with disabilities and are an invaluable asset to providers and policy makers. Family involvement through structures like the WI Children's Council increases the likelihood that systems of support and services are helpful, effective, and efficient and provide the greatest possible flexibility regarding the nature and use of services and support and maximize community inclusion and natural supports.

Partners: Family Voices of Wisconsin WI Survival Coalition of Disability Organizations Board for People with Disabilities Disability Rights Wisconsin WI Department of Health Services - Council on Children with Long-Term Support Needs

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