VOLUME 2
2021 Yearbook
2021
Partners in Disability Leadership
CONGRATULATIONS, GRADUATES!
The 2021 Partners in Disability Leadership class held its graduation ceremony virtually on September 17, 2021.
by Wendy Ward, Leadership & Advocacy Coordinator for The Arc of Texas
The beginning of my journey with The Arc of Texas coincided with the launch of the second year of Partners in Disability Leadership (PDL). It is through PDL that I had the opportunity to get to know and work with leaders across the state, all of whom showed such dedication to the task of improving services and supports for Texans with intellectual and developmental disabilities (IDD). The PDL participants were selected for the program based on their considerable talents, which are evident when you read about the projects they are implementing or planning to undertake to promote positive change across IDD systems in Texas. It was also an honor to work with gifted presenters who discussed a wide range of topics from the history of
perceptions of IDD, to challenges facing the direct support workforce, ways of creating cultures of inclusion and positive values, and improving public policies for the benefit of people with IDD; indeed, for the benefit of all of us. PDL’s speakers are trailblazers in their areas of expertise, and we learned so much from them. The PDL team appreciates their support of the newest class of partners. It has been such a privilege to work with you all. Congratulations! And thanks so much for moving the program forward and for supporting the mission of The Arc of Texas to promote, protect, and advocate for the human rights and self-determination of Texans with intellectual and developmental disabilities.
PDL SPEAKERS Ara Merjanian
“Lift up other leaders in your organizations and community … think about how you can position others to be leaders.”
Erin Lawler “You don’t always get to see the results of the good that you do, especially the seeds you are planting today that will blossom in 10 years or in a generation.”
Leigh Ann Rodgers “This is an intense program and you put a lot of effort and time and energy into it to learn about yourself, to learn more about how you can work in your jobs, to network with all these amazing people in your cohort.”
Gail Godwin “We know this group will move forward and do amazing things.”
Amanda Lay “I wish you success and happiness, and I wish you all well in all you do.”
Emily Ladau “I want you to take away from this program that you have the power to share stories and you have the power to make a difference. Changing even one person’s mind can have a ripple effect.”
Torrie Dunlap
“My encouragement to you is to stay rooted in your inclusive values and always remember to meet people where they are. If you can do this, you will thrive as a leader and you will help others thrive.”
Kathie Snow “All of you are in unique positions to fulfill the mission of the training to create a culture of inclusion and to promote positive values. I have no doubt that each of you will have a powerful influence on the lives of so many others.”
Lawrence Carter-Long “It’s now up to you to take that knowledge, take that information, fuel it with your own passion and your own commitment and go forward to make the positive changes you want to make in the world.”
Nicole Jorwic “I know with the skills and information you gained, you’ll be even stronger advocates than you were coming in and that’s exactly what we need.”
Ari Ne’eman Dr. Deborah Spitalnik Joe Macbeth
Dr. Miriam Williams Karen Topper Max Barrows
2021
Partners in Disability Leadership
TRANSITION SUPPORT TEAM PROJECT
By Lynnette Aguilar, Tara Devilbiss, and Haley Turner
Health and Human Services Commission (HHSC) currently funds, through federal Money Follows the Person Demonstration Grant, eight transition support teams (TSTs) across the state of Texas. TSTs are operated by eight local intellectual and developmental disability authorities (LIDDAs) and cover all 254 counties in Texas. The TSTs are charged with providing technical assistance, educational opportunities, and case consultation to community providers and LIDDAs that support people with complex needs. The goal of the program is to provide the IDD service delivery system with skills necessary to divert and transition individuals from institutional care and ensure their success in the community. The TST project was created to gather and analyze information about the success of the current program structure and create opportunities for program improvement. The project team reviewed data from stakeholders who receive services from the TSTs and feedback from the existing TST providers. The
initial plan was to provide a single, evidence-based approach for all TSTs to subscribe to. However, as the project team analyzed the data and feedback, we discovered each TST varied in their approach and not all TSTs required nor desired the same level of enhanced program support. Therefore, the project team decided to change course and develop program improvement recommendations that can be used in a variety of ways to enhance the uniqueness of each TST. The team has developed several recommendations to support all TSTs based upon their unique, local area service needs. The project will continue beyond PDL with the implementation of these recommendations for improvement. HHSC will hire a team of experts to assist with continued program improvements and enhance the state level support of the local programs. A huge thank you to our TSTs and PDL for supporting us in this project. We have a very exciting roadmap laid out for improvements to service delivery in Texas.
Transition support teams (TSTs) provide technical assistance, educational opportunities, and case consultation to community providers and LIDDAs that support people with complex needs
M
Lynnette Aguilar, M.A., BCBA, LBA
Tara Devilbiss, LMSW
Haley Turner
Program Operations Coordinator, Texas Health & Human Services Commission
Associate Commissioner of Intellectual and Developmental Disabilities, Texas Health & Human Services Commission
"I feel it is our responsibility as a society to develop a culture of inclusion and integration for our most vulnerable individuals within their communities. By participating in this program I gain the professional skills required to prepare providers within my organization to be equipped with tools which will be geared towards the rights of those with IDD."
"I participated in The Arc of Texas Partners in Disability Leadership to become a better advocate for this population and share knowledge in my role as program operations coordinator in IDD Services, as well as to further my education in the field and develop my leadership skills.
"Although I have been in the field of IDD services for more than 15 years, I am a firm believer that there is always more to know and more room to grow. It is my sincere intent to maintain deep connections with people receiving services and our local and state disability providers, advocates, and families. Participating in The Arc of Texas Partners in Disability Leadership program will fulfill that intent."
Director of Training, Behavior Change Institute
2021
Partners in Disability Leadership
IN-DEPTH COLLABORATION WITH LOCAL SPECIAL EDUCATION DEPARTMENTS
By Katheleen Chaney
I have been working intakes at the local MHMR for 6.5 years. I see big gaps in the Special Education Department in knowing what services and supports are available to kids and their families. Some of the items my project would address is how to support the families and help them navigate the system. I will cover how families can access SSI and Medicaid, Medicaid Waiver programs, guardianship,
psychiatry services, day programs, vocational/life skills, and crisis services. I will use our Facebook page and website to include handouts, videos, pictures, quick links, and other materials to provide information on local services and supports. This information will help those who work closely with kids and their families to provide more knowledge and supports which will help by reducing gaps in services.
Katheleen Chaney "I want to better our communities and make our programs strong for those who need services and supports to live their best lives."
AN ACCESSIBLE FUNDING RESOURCE GUIDE By Nikki Belshe Lanza (she/her/they)
As a home and community-based therapist, I witness accessibility and equity issues every day. My goal was to create a Music Therapy Funding Resource Guide to be hosted for free on the website of the nonprofit organization with which I am involved, complete with a plain language version. The goal is for consumers in the state of Texas to utilize this resource to find support and secure funding for music therapy. I realized early on that this would be an ever-evolving resource that would need to be a living document to best serve the community. This collaborative living document is currently being finalized by
board members of Fort Worth Music Therapy Fund, board-certified music therapists, and other experts throughout the state of Texas. The guide will eventually be available on the nonprofit Fort Worth Music Therapy Fund’s website, and we hope that other states and disciplines can model similar resources to make services more accessible and attainable for disabled individuals and those with mental health needs. PDL’s focus on accessibility and inclusivity informed many components of this resource, and we hope to continuously improve the accessibility of this guide as we hear from stakeholders.
Nikki Belshe Lanza (she/her/they)
Clinical Director at Heart and Harmony Music Therapy "As a for-profit music therapy practice owner and current president of a nonprofit organization devoted to increasing access to music therapy, I care deeply about equitable access to therapy and healthcare services, especially for marginalized folx who experience barriers to access. I wanted to pursue The Arc of Texas Partners in Disability Leadership Program to learn how to be a better ally and advocate alongside individuals with intellectual and developmental disabilities."
2021
Partners in Disability Leadership
INCREASING CAPACITY AND COMPETENCY FOR DISABILITY SERVICES PROVIDERS By Hannah Bednar, Katie Beach-Spradlin, Calen Hawkins
The initial idea for our project was to: • Solicit feedback regarding challenges of Home and Community Based Services (HCBS) Providers, • Implement strategies at MHMR Tarrant to provide support to Direct Support Professionals (DSPs), and • To measure the efficacy of those strategies in retaining DSPs. When starting our project, we encountered several unexpected barriers and developed strategies to overcome them as we went, by bringing the right people to the table. Our next steps include the continuation of strengthening relationships between the Local Intellectual and Developmental Disabilities Authority (LIDDA) and HCBS providers by developing open channels of communication and responding to their clients’ needs. The overarching goal is to bolster DSPs skills which will, in turn, reduce institutionalization. We will also advocate with Health and Human Services (HHS) to provide feedback regarding needed supports
to improve training, morale, and reduction of turnover for providers. We will monitor the efficacy of initiatives implemented, such as National Alliance for Direct Support Professionals (NADSP), and share successes and lessons learned among providers, LIDDAs and HHS. Our project has produced two major successes. First, we have seen a strong desire from communitybased providers to participate in interviews which have yielded meaningful feedback. Second, we have substantial interest to pilot NADSP training within our agency and have executed a contract to begin rollout this year. One of the most important things gleaned from our project is that people in DSP roles want to be empowered to be and feel successful in their careers and promote quality of life for the people they support. The biggest benefit of PDL for our team is coming away with a sense that there are like-minded partners in the field who are ready to help scale this and other initiatives, statewide and beyond.
Hannah Bednar, LMSW
Katie Beach Spradlin
Calen Hawkins
Director, START Crisis Program at MHMR of Tarrant County
Director Of Quality Assurance at MHMR of Tarrant County
Director of Intake & Access at MHMR of Tarrant County
"I chose to pursue this program because I am continually looking for professional development opportunities to further my career. I am a social worker and have always tended toward macro work because of the ability to impact more people. I hope to gain knowledge, skills and abilities as well as create lasting partnerships that will benefit me and my agency. I believe this program will help me further my reach and set me up for success in my career."
"I hope to create a network of people who can collaborate for progress in the everevolving landscape of quality services and supports for people with intellectual and developmental disabilities. I have a great passion for bringing social awareness to issues that need community solutions and being a voice for those who are chronically unheard. I wanted to be a part of an organization that shares my values and strives to take action."
"My best hope from graduating this program would be to develop a consistent network of partners to advocate for and increase community living access and quality of life for people who are at risk of institutionalization to better service delivery and service in the state of Texas. I am always seeking opportunities to expand my knowledge of contacts and services across the state with the common goal of equity, exceptional quality of life, and community for all people accessing Disability Services. This program facilitates knowledge sharing, community, and effective tools to create change and growth within the Disability Service systems. I would love to take the knowledge from the leaders in this program to advocate for equity and meaningful support for all people accessing services in my community."
People in direct support professional (DSP) roles want to be empowered to be and feel successful in their careers and promote quality of life for the people they support.
2021
Partners in Disability Leadership
WE CAN FIX THIS!
Integrating Goodwill’s Disability and Internship Program Information into Vocational Rehabilitation Onboarding
By Todd Bell
My project focuses on the need to increase communication within the disability community. The initial plan was to create a toolkit to increase family awareness of available Vocational Rehabilitation (VR) programs. Although this is still a long-term goal, I decided, based on conversations over the past few months, to begin with one piece of that larger goal. In Central Texas, there is a direct link between the local workforce area board, Workforce Solutions, Vocational Rehabilitation (VR) services and Goodwill Central Texas. For example, Goodwill is contracted to provide Summer Earn and Learn (SEAL), Project Search, Student HireAbility, and other work experience programs that require working directly with VR. Many of the programs must receive direct referral from VR to operate. The challenge of high turnover in the industry and the extensive amount of knowledge that must be
learned during onboarding for new VR counselors potentially creates a service delivery gap for clients. This can lead to confusion and a lack of collaboration between agencies that are necessarily intertwined. With that in mind, I am beginning the process of creating a short onboarding module for new VR counselors that explains how this relationship works. Although the plan going in is to create short videos explaining the relationship between agencies, my first step is to collect feedback from the counselors to ensure that this is their preferred medium. If there’s one thing I’ve learned over the past few months, it’s that collecting feedback from your intended audience is an essential first step. My hope is that streamlining the communication between these agencies will decrease some of the current confusion and lead to greater communication with families and ultimately better service delivery.
Todd Bell
Student Hireability Navigator at Goodwill Central Texas "My primary goal once I have made it though the program is to have more ideas and strategies to better advocate for my students. I am looking at creating a toolkit to increase family engagement. My current role is advocating for students with disabilities in the Capital Area. I am interested in 'upping my game' in this regard and bouncing ideas around with other people in the community. My focus right now is family engagement and creating efficient communication pathways between stakeholders."
MY RIGHTS, MY WAY By Alexandra Ellis
Basic human rights are often taken for granted. Society expects each person to understand their rights fully and exercise those rights independently. Responsibility for knowledge lies with the individual. But what about those individuals who have difficulty accessing information due to a disability? How do they learn about their human rights and disability rights? How is understanding determined and ensured? A person diagnosed with deafness requires information to be presented differently than a person who is diagnosed with blindness. A person with autism and an IQ of 120 processes information differently than individual with limited to no verbal communication skills with
an IQ of 42. Yet, they are all provided the same materials regarding their rights. I challenge the state to offer information regarding human and disability rights in a variety of media formats that promotes plain language, inclusivity, and self-direction: A rights booklet written in braille; a video presentation of rights with both closed captioning and ASL interpretation offered on screen; a video presentation of individuals with disabilities explaining what their rights mean to them and exercising those rights in multiple languages. Let us empower people with disabilities by providing them a basic understanding of their rights in formats they can identify with and understand.
Alexandra Ellis
Program Manager, DD Authority Services, Heart of Texas Region MMHR "Over the last 20 years, I've dedicated my time and talents to help individuals with IDD and their families. It is time to elevate my leadership within my organization so that we can help more individuals and their families and provide better quality services utilizing the resources within our area."
2021
Partners in Disability Leadership
BRIDGE TO FRIENDSHIP
By Erica Nunn and Robin McEachern
We came in with idea of creating a program that could help individuals with intellectual and developmental disabilities (IDD) develop friendships. With ongoing sessions, we were able to narrow the scope and fully develop and scrutinize details needed to implement this type of program throughout the state. Through collaboration, we were able to find other organizations that do similar programs in other states that could potentially be implemented here in Texas. For someone who is unfamiliar with disability issues, particularly barriers to community involvement, it would be important to explain how often this group is marginalized and the importance of creating meaningful connections for all of us in life. After pitching the idea to leadership, the next steps of this project including reaching out to some of the existing programs to see how they have been implemented and determine how a
similar system could eventually be provided in Texas. The most important takeaway people should receive from this project is that we have, for many years, focused on a medical model of service delivery in Health and Human Services, but seemed to have left out the human aspect of it. What is the point of making sure someone has their medical needs met if their life is spent isolated from the community and or others around them? We think it’s important to have a holistic way of thinking in terms of services provided and quality of life. From this PDL experience, person-centered practice sits at the forefront. Start from the person and make services fit their needs rather than try to make a person fit in a box of services to be provided. When we move away from the medical model and towards the social model, we have outcomes the individual desires. This is what service provision should be.
Erica Nunn
Policy Lead in Long-Term Services & Supports for Health & Human Services Commission
"I've worked in the disability field my entire career. I have always wanted to have a larger impact on this population; improving the quality of life, access to care and participation in the community."
Robin McEachern "My goal is to utilize the knowledge I acquire from both the program and participants as a platform to improve the quality of services provided to individuals with disabilities."
REDESIGN By Courtney Carey
My initial idea was to take our residential program from "important for" to "important to." I wanted to work on enhancing the residents’ quality of life however they defined it. During COVID, the "important for" was being taken care of without question. Very few of the residence got sick, and the ones who did are okay now. There was so much to learn as a fairly new administrator, even though I knew quite a bit from being in other roles for the past 20 years. We currently run seven group homes (among other programs), 24 hours a day, 7 days a week. These homes have four individuals with IDD with various medical, physical, emotional, and behavioral needs. I wanted our program to pass the "Burrito Test." The Burrito Test is simple: Can the residents of the group home go into the kitchen at 2 a.m. and make
a burrito in the microwave? Will the staff offer to help, but remind them that a burrito at 2 a.m. might cause indigestion or other stomach issues? Or would the staff tell them, "No. It’s 2 a.m. and you can’t have a burrito at this time," and escort them back to their room? If the first scenario occurs, you have a person-centered program, but if the second scenario occurs, there should be training opportunities for staff. The purpose of this project is to enhance the quality of the lives of the individuals using our services. Multiple factors have contributed to complex issues over many years, some which include staff working in multiple facilities, both community and institutional, the shortage of staff in the state, and the COVID–19 pandemic. However, I will keep going. I can’t stop.
Courtney Carey, MS, BSW, TxCG
Director of Provider Services, Denton Co. MHMR Center "I hope to have a better understanding of the population as a whole, leadership within the service array and what services, supports and resources available to support those we serve and their families, friends, and caregivers. I have worked with both the ARC and in the IDD field for over 15 years. This opportunity to learn and increase my knowledge and further develop my leadership skills in the community seemed like an excellent way to spend my time, not only for me, but for those I lead and serve.
2021
Partners in Disability Leadership
INTEGRATION PLAN
Building Synergy Between Workforce Solutions and Texas Workforce Solutions– Vocational Rehabilitation Services By Ricky Rendon
Texas Workforce Solutions– Vocational Rehabilitation Services (TWS-VRS) is in the process of fully co-locating into Workforce Solutions (WFS) Career Centers. TWS-VRS and WFS are part of the Texas Workforce Solutions network under the direction of the Texas Workforce Commission. Both agencies have a shared commitment to provide services that can assist job seekers in finding and keeping good jobs and assisting employers in hiring the skilled workers they need to grow their business. However, TWS-VRS specifically serves job seekers with disabilities. This PDL Project offers a holistic integration plan designed to transform this co-location process into an impactful integration that fosters synergy and a shared vision. The integration plan focuses on convening partners to conduct
meet and greets, collaboration meetings, cross-trainings, and strategic discussions on how to leverage resources and maximize services for individuals with disabilities. To ensure sustainability, staff will have the opportunity to participate in a disability ally program dedicated to monitoring and promoting accessibility of services. In addition, the plan provides guidance on coordinating a ribbon cutting ceremony and other activities that can increase awareness and visibility of services to the community. The ultimate goal of the integration plan is to strengthen the partnership between TWS-VRS and WFS to truly establish a One-Stop Shop Center for workforce solutions and lead systemic solutions that effectively advance successful employment of individuals with disabilities.
Ricky Rendon Business Relations Coordinator, Texas Workforce Commission "I decided to join the Partners in Disability Leadership Program because it provides an opportunity to collaborate with diverse individuals and strategize solutions that advance inclusion of individuals with developmental disabilities. I look forward to learn from all who are involved and take that knowledge back to my community."
A SELF-ADVOCACY GROUP IN COLLIN COUNTY By Jeanine Alpert
Based on the idea that My Possibilities (MP) could be more committed to selfdirection and full participation of our clients, my original idea was to start a chapter of People First, a national self-advocacy group, in Collin County. I quickly understood that it was not my decision to make. A self-advocacy chapter for adults with intellectual and developmental disabilities (IDD) needs to be created and championed by individuals with IDD. I began to explore ways to build interest in creating a self-advocacy group. Because I work at a nonprofit agency that provides continued education for adults who have completed their K-12 education, it is possible to build a selfadvocacy course that adults with IDD could choose each semester during course selection. As a result, in MP’s leadership track, a selfadvocacy course is being created for implementation in January 2022. The thought process is that the selfadvocacy group and subsequent
chapter establishment could be an outgrowth of this class. This project can amplify the voices of adults with IDD and support their self-expression, self-awareness and self-care regarding topics and activities that are important to them. This leadership project is an outcome of the “nothing about us without us” (United Nations Convention on the Rights of Persons with Disabilities) model and encouraging individuals to speak up for themselves. History has generally shown that when a group of people speak up for themselves and tell the stories about their challenges and/or barriers they have faced, the interest of others tends to more meaningful, authentic, and lasting. This idea fits with my biggest takeaway from PDL: that I can have the best of intentions to help adults with IDD, but I am not the strongest driver of change. I need to listen to those I am trying to help and seek their input, collaboration, and/or partnership. Without this, true inclusion is limited.
Jeanine Alpert
Director of Clinical Services & Research at My Possibilities "I look forward to interacting with like-minded individuals and the variety of experiences within the disability community and building connections in ways that can further my social justice and advocacy work. I would like to get more involved in social justice and advocacy, working with and for individuals with intellectual and developmental disabilities in a larger capacity than agency work. I would like to understand the systems that exist to support those with disabilities and how to get involved to create change."
2021
Partners in Disability Leadership
AUSTIN PARABLE A JOURNEY TOWARD COMMUNITY FOR ALL By Eleanor Thompson
Austin Parable was founded in 2016 and seeks to form a L’Arche community in Austin. It began with the dream of Carol Moczygemba, a small, sprightly woman with a twinkle in her eye, who dreamed of an inclusive community for her daughter. And so, parents, educators, religious leaders, and community members with and without intellectual and developmental disabilities (IDD) banded together to form Austin Parable. After four years of community building, Austin Parable has the task of discerning the right program model for us. Our project has focused on developing a needs assessment. We knew we wanted to include the voices of people with IDD, but we needed help developing inclusive practices and making authentic connections with adults with IDD. This project has helped us clarify the kinds of data we need to collect and identify multiple ways to connect with adults with IDD through such
groups as Texas Advocates, While we began trying to find ways to create a community for people with IDD, the PDL program has expanded our thinking and deepened our appreciation of true inclusive practices. We are listening now, not just to ourselves but to individuals with IDD. We thought we knew where we were going, but our journey has been enriched and shaped by the connections The Arc of Texas helped us create. Our mission is to forge authentic friendships, uphold the dignity of individuals with IDD, and nurture each person’s gifts and passions. Listening to the IDD community will show us where we need to go to help realize this dream. Our goal moving forward is to implement the plan we developed through this project to create a needs assessment that reflects the voices of adults with IDD and that informs the selection of our program model.
Eleanor Thompson "As a special education teacher, I have worked for 13 years with elementary-age students with intellectual and developmental disabilities (IDD). Each student has taught me something unique, and the process of being a part of their education and person-centered planning has inspired me to work towards the development of high quality post-secondary choices for individuals with IDD. I want to help individuals with IDD lead satisfying, independent lives and have as many high-quality choices available to them in their communities as possible. For the past four years, I have been a part of Austin Parable, a group which is now two years into the L’Arche discernment process. Austin Parable’s goal is to create an inclusive community of people with and without disabilities in Austin, Texas, with mutual love, acceptance, and service at the heart of our journey together. We look forward to reaching out to a diverse group of individuals with IDD and including them meaningfully in leadership and decision-making in the Austin Parable community.
"The PDL program has expanded our thinking and deepened our appreciation of true inclusive practices. We are listening now, not just to ourselves but to individuals with IDD."
-Eleanor Thompson
2021
Partners in Disability Leadership
REIMAGINING TARRC
Evaluating a Resource Center for Successes, Opportunities, and Potential Innovations
By Gretchen Nelson
The Texas Autism Research and Resource Center (TARRC) was approved during the 81st Legislature and became effective September 1, 2009. TARRC’s mandate is to collect and provide research about autism and other pervasive developmental disorders; conduct training for groups, including first responders who may interact with individuals with autism; coordinate with service providers; and provide support to people affected by autism spectrum disorder (ASD). This project evaluates the TARRC through the perspective of PDL goals of improving “the effectiveness and integration in the delivery of services and supports,” and supporting “policy that will promote quality of life for Texans with developmental disabilities.” A brief SWOT analysis determined the TARRC has successfully met mandates and responsibilities. Achievements include the development of The Texas Community Assessment and Planning Toolkit, 2018 Texas Autism Research Conference, and ASD Training Program for First Responders. The next stage is to obtain internal stakeholder feedback
to evaluate resource capacity required to maintain and update research, develop and conduct trainings for professionals, revise current toolkits and trainings, and successfully support families and individuals affected with ASD in a person-centered model. External feedback will be gathered to evaluate the effectiveness of current tools and trainings and review topics that could be included on the website to further support the initiative. The TARRC is currently included in each legislative session. The final project report may include recommendations for increasing resources and capacity, and possibly modifying or limiting previously mandated activities to reimagine a strategic personcentered resource center that can be efficiently maintained and updated to successfully meet the needs of Texans experiencing ASD. An innovative TARRC will promote self-determination, advocacy, and evidence-based research while creating opportunities for public and private service providers to safely support and promote inclusive communities.
FAMILY ENGAGEMENT LEARNING COLLABORATIVE By Eric Childress
Gretchen Nelson OPSH Eligibility Manager, Texas Health and Human Services Commission "I want to increase my awareness and understanding of disabilities and promote inclusivity in my community through action and policy. I briefly worked for a nonprofit organization serving individuals with disabilities. I learned so much, but am eager to learn more about how to support the community."
The family engagement learning collaborative will allow families the opportunity to provide input into the policies, procedures, and programs developed by Maternal and Child Health. It is a platform to address the need to increase family engagement across Maternal and Child Health programming. The family engagement learning collaborative will collaborate and meaningfully engage with other state organizations and programs, community stakeholders, and families of children including children with special healthcare needs. The family engagement learning collaborative will foster an environment where everyone who participates is equally respected especially the experts with valuable lived experience. Eric Childress Family Engagement Specialist, DSHS-Children with Special Healthcare Needs System Development Group
I want to gain knowledge and build leadership skills in engaging families, advocating for family leaders, and how to approach system level change in the CSHCN arena. I want to expand my network and connections to build working partnerships with others who work within the IDD population.
"WE NEED YOU TO LISTEN" A Conversation With Rebecca Cokely
T
he Partners in Disability Leadership (PDL) Class of 2021 graduated on Friday, August 27. To mark the occasion, Rebecca Cokley, the first U.S. Program Officer to oversee a Disability Rights Portfolio at the Ford Foundation, provided remarks at the virtual graduation ceremony. She spoke on a range of topics, including the state of disability rights in Texas, leadership qualities, the COVID-19 pandemic, and the principle of inclusion. Cokley noted the difficulties facing people with disabilities, the disability community, and its allies in the state of Texas regarding human rights and physical safety. Rather than feel helpless, she encouraged the PDL graduates to act. “I think it’s time to reclaim Texas and Texas’ legacy of being the standard bearer for the disability rights community.” She reminded the group of the state’s rich history of social justice and disability rights, pointing to Justin Dart, Jr., the “godfather” of the American with Disabilities Act and former student of the University of Houston, home of the Justin Dart, Jr. Student Accessibility Center. Cokley also spoke about Lee Kitchens, co-founder of the Coalition of Texans with Disabilities and pioneering engineer with Texas Instruments, and Alejandrina Guzman, the first Latina with a disability to be the student body president of a major college or university as a student at The University of Texas at Austin.
“Let’s just take a moment and acknowledge the fact that we wouldn’t have an Americans with Disabilities Act today, that we fight so hard to defend and to protect, if it wasn’t for Texas. I don’t think we talk about that enough in the community.” The PDL program cultivates leadership skills in current and emerging leaders in the intellectual and developmental disabilities (IDD) field. Cokley, a prominent leader in the national disability rights community herself, advised, “The key to being a leader in the disability community is that you might find yourself called on to do it anywhere at any time. You don’t have to work at disability rights or justice organization …. The important thing to remember is that just by being a presence in this space, just by speaking out, pointing out what’s wrong, what’s unjust in this world, and the need to make it better for all people, including people with disabilities. That is leadership.” She observed that leaders in the disability rights community can’t do their work alone. “What we really need from our allies, what disabled people need from our friends, our families, and our supporters, is we need you to listen, and we need you to amplify our voices.” The first and second year of PDL occurred virtually in compliance with public health measures to reduce the transmission of COVID-19. Cokley spoke of the resilience of the disability community and how people with disabilities navigate the virtual world. “I think one of the advantages that people with disabilities and our allies have when it comes to advocating in a virtual space is the fact that is the fact that we’re used to … let’s be real … we’re used to isolation. We’re used to exclusion. But what has it also done for us? It’s made us way smarter. Way more strategic and way more flexible.” Recognizing the effects of the pandemic will continue to challenge
Rebecca Cokley is the first U.S. Program Officer to oversee a Disability Rights Portfolio at the Ford Foundation
our society, Cokley’s thoughts reflect a position of strength. “The issues facing the disability community have never been easy. And that’s why we’re good at it. That’s also why we continue to fight.” The PDL program centers inclusion as a vitally important principle embedded in all sessions. For Cokley, it is not a murky concept. “The reality is that inclusion is a fight,” she says. “It’s a fight for the freedom and liberation of people with disabilities. It’s a fight for the right to live in our communities. It’s a fight for the right to have our voices heard.” The Arc of Texas is grateful to Rebecca Cokley for her wisdom and words of encouragement. The PDL graduates will create and implement practices and policies for positive systemic change and to improve the quality of life for Texans with IDD and their families. As she affirmed, “We know that when policies are shifted to include people with disabilities, they become better for everyone.”
8001 Centre Park Drive Suite 100 Austin, Texas 78754
© 2021 The Arc of Texas
www.thearcoftexas.org