MODDC 2023 Annual Report

ANNUAL REPORT 2023

"The idea is the more we proudly use the word Disabled, the less shame and fear there is attached

#DisabilityPride

a few words from the chair

MODDC has worked very hard over the years to put out great projects for self-advocates and parents. I am proud to be in this amazing group of individuals who continue to strive for a better world of individuals living with disabilities throughout the state of Missouri. We will continue to look for more projects to meet this goal in the coming year. We will never give up on trying to do better to get ahead in life. We make changes in people's lives by just living, no matter what the disability is, so look out world! MODDC could alway use a few new people. Apply for the Partners in Policymaking class and make a difference in your community.

DIANA WILLARD CHAIR

a few words from the ED

MODDC members and our hard-working team, are pleased to present our annual report that highlights some of the work accomplished by the Council in the last year. Collaboration is at the heart of our efforts, as we worked closely with our DD Network Partners of UMKC-IHD and MO Protection and Advocacy, disability organizations, policy makers, state agencies and other community organizations, to advance the rights and opportunities for individuals with developmental disabilities. Looking ahead, we are energized by the possibilities that the future holds. We remain committed to innovation, collaboration, and continuous improvement as we strive to have a positive impact in changing systems for people with developmental disabilities and their families.

VICKY DAVIDSON EXECUTIVE DIRECTOR

Our Impact

The Missouri Developmental Disabilities Council's (MODDC) mission is to assist individuals, families, and the community to include all people with developmental disabilities (DD) in every aspect of life.

DD Councils are groups that advocate for change. This change brings more equity to people with developmental disabilities. Each state has a DD Council.

MODDC is led by and for people with disabilities and their families. The work of the Council is guided by the experiences of individuals and families navigating Missouri systems.

MODDC works to make processes equal for Missourians with DD and Missourians without DD.

This is accomplished by funding innovative projects and partnering with universities, non-profits, and state government agencies.

The DD Network

MODDC is funded under the is funded under the Developmental Disabilities Act.

MODDC works as a partner with University Centers for Excellence and Developmental Disabilities (UCEDDs) and Protection and Advocacy (P&A).

UCEDD

Provides Interdisciplinary Training

Performs Community Services and Training

Conducts Research and Evaluations

Creates Awareness

DD Council

Seeks to Understand System Barriers and Create Change Works with Stakeholders to Achieve Change Empowers Advocates

P&A

Ensures Equal Access to Life in the Community Provides Legal Representation to People with DD Monitor and Investigates Conditions in Facilities that Care for People with Disabilities

FY2023 Funding Awarded

Restorative Justice

Sexuality Education

Goal

This pie chart represents the percentage of funding awarded for each goal.

WordstoKnow

Words to Know

Self-Advocacy: When you share your experience with people making decisions. A person who shares their experience is a self-advocate. Advocacy is also providing information.

Self-Determination:

The ability to make your own decisions and choices.

Systems Change: Changing a process to make someone's life better.

Competitive and Integrated

Employment: People with disabilities have jobs at the same places as people without disabilities. Employees with disabilities are paid the same as employees without disabilities.

Equity, Inclusion, and Intersectionality

MODDC embraces disability as a powerful identity group.

Disability is a natural part of life and is a valued part of our diversity. People with disabilities intersect all other identity groups.

So, MODDC funds projects to create systems change. The change we create impacts all diverse communities of Missouri.

Inclusion and full participation is a matter of social justice for everyone. MODDC works to remove barriers and inequities of the disability experience and the experiences of other groups.

MODDC collaborates with allies and partners, in a common struggle, to create change that empowers everyone.

Equity, Inclusion, and Intersectionality

Intersectionality consists of the many identities that make us who we are. Knowing and seeking to understand them gives a better picture of who we are.

It is impor

Some identities are visible while others are not. tant to remember that:

Characteristics like race, ethnicity, gender, sexual orientation, disability, class, occupation, and others can make up a person's identity.

These identities have the most impact in the areas in which

we are marginalized.

Recognizing intersectionality gives us an important tool to understand each other.

Class

Disability

Race

Trauma

Intersectional Identities

Religion

Sexual Identity

Relational Status

Gender

Our Goals

Councildevelopedastateplanwithgoalsthatfocuson

The self-advocacy, quality of life across the lifespan, and leading systems change. The plan also places health equity, racial bias, and discrimination at the forefront of its activities to achieve these goals.

Goal 1: Self-Advocacy Advances Rights and Inclusion

Effective self-advocacy strategies secure the rights to self-determination and inclusion for people with DD.

Goal 2: Healthy, Educated, and Connected People Thrive

Missourians with DD live in safe communities that enhance the quality of life across the lifespan. This includes, but is not limited to, barrierfree access to transportation, technology, healthcare, education, employment, housing, social services, cultural activities, and recreation.

Goal 3: Informed Leaders Make Change Happen

People with DD and family members guide changes to Missouri laws, policies, and practices by informing decision-makers and educating the public about challenges and solutions.

Goal 1: Self-Advocacy Advances Rights and Inclusion

Alternatives to Guardianship

The Alternatives to Guardianship Project helps people with DD avoid or terminate unnecessary guardianships by using safe and legal alternatives. It encourages and assists parents, educators, judges, lawyers, physicians, and other professionals to implement such alternatives whenever feasible. It promotes the adoption of public policies and systemic changes to protect the rights of people with DD, ensuring equal rights and access to justice. These activities are accomplished through research, education, counseling, and advocacy.

675 trained 130 consulted

than675peopleweretrainedon

More alternatives to guardianship. This included 355 professionals, 240 family members, and 85 self-advocates.

People First

More than 130 people consulted on the use of alternatives to guardianship.

Staff presented at Real Voices Real Choices on Self-Advocacy Leadership. As a result of the presentation, four people expressed interest in starting a chapter in their area and have began the process.

"I always learn a lot at Real Voices Real Choices about self-advocacy. I am reminded how important self-advocacy is to change things."

- Patty Goss, Self-Advocate

Goal 1: Self-Advocacy Advances Rights and Inclusion

SARTAC Fellowship: Technical Assistance

MODDC is the host organization for 2023 SARTAC Fellow, Anna Montaldo.

The course teaches people with DD (and their supporters) basic leadership skills, etiquette in communicating with influential people (such as legislators), and how to be successful in a professional setting.

Anna was selected as one of six nationwide recipients of this fellowship. The program includes original videos, which are easy to access and share on multiple platforms. Videos also make the content engaging, easy to digest and memorable for our target audience. Each participant received a Zoom Link for webinars, paper resources, and topic videos.

"This has helped them realize that yes, I am disabled. But just because I am disabled, doesn’t mean that I don’t have knowledge or the capacity if you know what I mean, to do things. I am able to do things, it just may take me a little longer and that’s ok."

- Self-Advocate Participant

Transportation Goal 2: Healthy, Educated, and Connected People Thrive

Three free virtual webinars on transportation issues were offered by MODDC this year. First, in partnership with the Missouri Behavioral Health Council, people learned how work incentives can help pay for work-related expenses like transportation. By using Impairment Related Work Expenses (IRWEs) and the Plan to Achieve Self -Support (PASS), attendees learned details on how to utilize these resources through live case studies.

A second webinar on braided funding for transportation was presented by the director of the Camden County Developmental Disability and the project associate for the National Center of Mobility Management. The Transportation Task Force’s annual summit shared the importance of accessible transportation and current gaps that exist for people with disabilities. National and state speakers shared about transportation needs and next steps to developing mobility options for communities throughout the state of Missouri.

Employment First

MODDC collaborated on the National Expansion of Employment Opportunities Network (NEON) grant. This grant provided technical assistance to support policymaking and competitive integrated employment.

DB101 has an estimator tool that helps people who receive social security disability estimate how those programs will Scan to Learn More affect income so they can at least earn minimum wage.

MODDC hosted a training that had 103 people attend live and 272 received the recorded training.

MODDC funded a project to update the DB101 website to be accessible and mobile-friendly.

DB101 provides articles, videos, and links to other learning resources. Video resources include the following topics: What is SSI, SSI and Youth Who Work, SSDI and Planning for Work, SSDI Work Incentives, and SSI and Work.

Goal 2: Healthy, Educated, and Connected People Thrive

Disrupting the School to Prison Pipeline (SToPP)

This project is a train the trainer project. It is creating trainings for educators, school resource officers and other community members.

The trainings are about Restorative Justice (RJ).

RJ is relationship work. It is a style of justice that sets out to:

Build relationships

Repair harms

Enhance respect

Recognize responsibility

Enable Reintegration

Grantee:

Missouri Juvenile Justice Association

"The St. Louis training team has continued to be regarded as a ‘model team.’ They are comprised of a juvenile court employee, a police officer, a school staff official, and a community partner who works closely with juveniles and have been able to participate in all trainings. The team leader was able to build their team very quickly due to previous community partnerships. It is believed they will have no problem being successful in this project.”

-SToPP Project Participant

“I enjoyed the in-person participation and feel it will go a long way knowing expectations and how to go forward with schools, kids and families. I think this will work with families and getting to know their needs.”

-SToPP Project Participant

46 trained

Four train the trainer teams were developed to work in five counties. A total of 46 people have been trained. They make up and support four training teams.

State-Wide Summit A was provided and two training videos were completed. These efforts prepared the training teams to do their work.

virtual,statewideRestorativeJusticeSummit

SToPP has trained four training teams in five counties to use RJ in schools. Because of RJ, students of color who have DD will have a better chance of being treated fairly. Students will be in the classroom more. They will be more likely to have a good, equitable education. The focus of the trainings will be on supporting students instead of punishing them.

Goal 2: Healthy, Educated, and Connected People Thrive

WE CARE (Wellness, Education, Confidence, Assessment & Recognizing Emergencies)

The Association on Aging for Developmental Disabilities (AADD) is creating the WE CARE family care at home curriculum and trainings.

WE CARE stands for Wellness, Education, Confidence, Assessment and Recognizing Emergencies.

The trainings will help people with DD and their aging caregivers.

As family members age their needs change. Family members who have developmental disabilities may take on extra tasks.

They do this to support their family member who cares for them. WE CARE will teach people with DD the skills they need to care for their family.

The goal is to increase the ability of family members to support each other. This will help everyone age in place. This will save money, keeping people out of institutions and nursing homes. It also keeps the family together.

The trainings created are being tested with a small group in St. Louis. The training modules being tested will become an online course so everyone in Missouri can use it.

12 people with DD and 7 family members in the pilot.

Everyone was satisfied with the project. Everyone is currently advocating and increasing their advocacy because of the project.

Goal 2: Healthy, Educated, and Connected People Thrive

Accessible MAANIS "After Abuse" Resource

Mapping the Missouri Adult Abuse and Neglect Investigation Systems was created to help self-advocates and those that support them navigate situations of reported abuse.

The most recent version called "After Abuse" is made with survivors with DD in mind as the primary end users of the resource.

This project was able to be created in conjunction with another UMKC grant to map out the Long Term Care System. Advocates and subject matter experts were able to engage in both projects creating a cross-disability and cross cultural approach to this comprehensive resource.

"Helped me understand the different types of agencies involved in investigating adult abuse. I look forward to the website containing all the resource information. I plan on sharing this information with our county public administrator.” -Victim Advocate who attended a training on this resource.

Goal 2: Healthy, Educated, and Connected People Thrive

Digital Inclusion

A technology project aimed to provide trainings that explain the different programs available to assist people with DD and their families with access to adequate technology resources.

The project is also able to provide support in completing applications for available resources. MOAT, an ongoing partner of MODDC, implemented the project in July 2022.

34 people with DD, 19 family members, and 163 professionals participated in Digital Day events.

Health Disparity

MODDC partnered with the UCEDD to understand and address statewide data related to health status of people with DD compared to the general population.

Although there is accessible data on the health status of people with DD across the country and in MO specifically, there is a lack of published work that examines health disparities across the lifespan in Missouri.

Sustainability: UMKC-IHD will be leading a study using Center for Medicaid Services (CMS) data to explore preventative health care use in Medicaid recipients with DD in the past five years with a focus on race, ethnicity, and geographic location.

A focus on intersectional identities in the DD Community and an exploration of identified disparities will help further the work of this project.

11 advisory council members collaborated throughout the project; feedback was provided on resources as well as unique perspectives that could guide the work.

Goal 2: Healthy, Educated, and Connected People Thrive

Teledentistry

Missouri Coalition for Oral Health (MCOH) is implementing a project that provides teledentistry services to people with DD.

Teledentistry services are not provided at a dentist's office. They are dental services that are community based or in someone's home.

MCOH is also creating trainings and educating dental care professionals. The trainings will help people understand the best ways to provide dental care services to people with DD.

103 dental patients in year 2

In Year 2, 103 dental patients with DD have been provided services through teledentistry or mobile dentistry as a result of this project.

180 dental providers enrolled

Since mid-2022, more than 180 new dental providers have become enrolled in MO HealthNet.

One dental patient’s mother was in tears after the visit and voiced gratitude for the staff and services because this was the first time the patient was able to get a true dental appointment. Enable Dental staff were equipped with the tools and knowledge to help the patient to remain calm and enjoy the visit.

Goal 2: Healthy, Educated, and Connected People Thrive

Missouri Family to Family (F2F)

Missouri Family to Family is a family driven statewide resource organization. Provides people with DD and their families with the information, skills, opportunities, and support that lead to independence, productivity, self-determination, integration and inclusion.

Scan to Learn More

"My son was diagnosed with Autism Spectrum [Disorder], 3 weeks before that I had to bury the father of my child, who died unexpectedly, while we were waiting for the diagnosis for our son. I was a wreck. I was feeling lost and confused after being herded through the system. I received a call from a gentle calming spirit. This spirit helped me refocus. While I was on the phone with her, she was creating my Support Star, just by listening to the things that I was telling her. Then she walked me through creating a Trajectory for my son. These 2 things were so impactful because she showed me that it was within me. When I didn’t think that I had anything left in me she showed me that I was and am a STAR. She also provided me with a way to receive pull-ups for free and pointed me in the direction of some excellent training videos. I was reassured that I was not alone and that if I ever wanted to be matched with a parent who truly understands what I am going through she would be able to match me. I don’t believe in coincidences. It was meant for MOF2F to call me that day." -Family Member Participant

860 supported.

1,557 total interactions.

27,740 total minutes.

35.5 average call time.

Goal 2:

Healthy, Educated, and Connected People Thrive

Missouri Association of County Clerks and Election Authorities Conference Presentation

Voting Accessibility Training and Discussion with statewide clerks, election authorities and their staff.

Partnered with Paraquad and Missouri Council of the Blind to present on accessible voting practices.

Preliminary virtual listening sessions were held with self-advocates who could not attend in person to make sure their concerns were presented and solutions identified.

At the training, participants were presented with common scenarios people with DD encounter when voting, and collaborated with self -advocates in the room to come up with solutions.

of clerks and election authorities reported that they received new information from the training that will help them provide accessible 92% voting experiences to their voters.

the survey reported that they plan to use the 96% provided in the training.

Goal 2: Healthy, Educated, and Connected People Thrive

Emergency Management Disability Awareness Training

MODDC contracts with Niagara University (NU) to implement Emergency Management Disability Awareness Training (EMDAT) to address the lack of training to address needs of people with disabilities in all phases of disaster. The intent of the trainings are to bring communities together and create disability advisory groups in each Missouri region to ensure robust planning with the disability community before, during and after disasters.

KBIA print and radio media interviewed MODDC and NU for a series of articles and radio spots related to preparedness. trainings were held this year where the disability community participated alongside people

6 the emergency management community.

158 trained.

Emergency Preparedness Training

MODDC is a leader for emergency preparedness for people with disabilities and was asked to do five presentations/trainings during the federal fiscal year. These included training for Federal Emergency Management Agency (FEMA) staff and presenting at the National Voluntary Organization Active in Disasters (NVOAD) conference in St. Louis.

Presentations ranged from preparedness to include people with disabilities in planning with emergency management.

MODDC worked with KultureCity to support the sensory space at the NFL Draft that drew approximately 500,000 people to Kansas City.

MODDC chaired the Access and Functional Needs Committee every other month where training topics are provided to an average of 50 attendees.

Goal 2: Healthy, Educated, and Connected People Thrive Partners in Policymaking Graduates

In August, MODDC and the University of Missouri Pre-Employment Transition Services hosted a free two-day virtual webinar for Missouri Partners in Policymaking graduates. Participants learned how to find competitive integrated employment and how they can help bring more awareness to available resources.

Competitive integrated employment is when employees are getting paid the same amount as employees without disabilities and when people with disabilities have the choice to get the same kind of jobs as people without disabilities.

At least 25 Partner graduates contacted their legislators to effectively advocate for themselves and others to influence systems change.

“I am involved in my local parent advisory council where I share resources and help other parents through the journey of special education and access to community resources.” -Webinar Attendee

“I am meeting and educating legislators, educating communities around me, advocating for access to education in colleges.”

-Webinar Attendee

“I maintain relationships with several political leaders and we openly discuss issues with inclusion and access to services."

-Webinar Attendee

Advocacy Through Technology

Goal 3: Informed Leaders Make Change Happen Supporting Language Access in Schools

Language Access is sharing information that people can understand.

People have to understand information so they can participate as much as they would like; especially when it comes to services or a person’s rights.

The National Association of Educational Translators and Interpreters of Spoken Languages (NAETISL) and Revolucion Educative (RevEd) are working together with others to make language access in schools better.

Families need to have good interpretation and translation services so they know what is happening at school and understand their education rights. If they have quality language access, they can be strong special education advocates.

14 advocacy events (virtual and in-person) were held. Each event drew 20 to 40 Spanish speaking families.

Spanish speaking parents who have students who receive special

26 education services were provided 1 to 1 coaching on language access issues.

"We have expanded our range of options in terms of therapeutic support and resources for the education of our child, sharing opinions and experiences with other families who are in the same situation as us. We are learning more about education in general & also about special education in the case of my son who is autistic.”

Goal 3: Informed Leaders Make Change Happen Supporting Language Access in Schools

Trainings have started so that school leaders are: aware of their legal obligations to provide quality language access. aware of language access best practices. aware to get qualified providers for interpretation and translation services.

Spanish speaking families are meeting and learning how to: receive quality language access in schools. receive the supports and services they need through quality language access. be aware of their language access rights.

Spanish speaking families are being trained and supported to lead this work.

"We have seen that by knowing these resources... and by attending the different workshops, we have a greater confidence in knowing that as Spanish speakers we are not alone. And, there is great support for everyone.”

Goal 3: Informed Leaders Make Change Happen

Disability Rights Legislative Day (DRLD)

Disability self-advocates and advocates from across the state came together to have their voices heard. The day consisted of a rally, three virtual breakout sessions and appointments with legislators.

"The rally was exciting and inspiring. There are so many in our state who need to have their voices heard by those who will sincerely strive to make changes..."

-DRLD In-Person Attendee

94% of self-advocates and 81% of family members reported they were able to increase their advocacy as a result of DRLD.

54% of participants spoke with a legislator.

"I appreciate the opportunity to attend virtually. I liked the variety of self-advocate speakers. Our child has intellectual disability, so I learned some things about barriers to full participation in society for people with physical challenges. Our local SB40 held a watch party and talked about what we could be doing."

-DRLD Virtual Attendee

Goal 3: Informed Leaders Make Change Happen Engaging in Policies

Following the guidance of the Councilcreated policy agenda, MODDC engaged substantively in 5 policies or regulations that impact people with DD and their families:

1. Ticket-to-Work

2. Employment First

3. Seclusion and Restraint

4. Self Directed Services/Medicaid Waiver Amendments

5. Guardianship

Council Member Rachel Baskerville testified on behalf of the Council for two bills: Ticket to Work and Employment First. Both passed and were signed into law in August 2023.

"People with disabilities have to navigate complex systems every day to meet their basic needs. Provisions in this bill would serve to alleviate some of that complexity and lead to a clearer path to work, independence, health and personal happiness."

-Excerpt from Rachel Baskerville’s Testimony

Right: Partners in Policymaking Graduate Nicole Noblet is pictured here with Senator Lauren Arthur, Governor Mike Parson and Representative Melanie Stinnett at the Bill Signing Ceremony at UMKC.

Goal 3: Informed Leaders Make Change Happen

Partners in Policymaking

Partners in Policymaking (PIP) is a training program for people with DD and parents of young children with DD.

PIP teaches leadership skills and techniques to develop positive partnerships with elected officials, school personnel, and others who make policy decisions about systems that impact people with DD and their families.

100% of graduates feel better prepared to say what is important to them.

“Partners in Policymaking is an amazing program. I am so happy that I was chosen to participate. I would recommend Partners to any parent of a child with DD or self-advocate.”

-2023 Partners in Policymaking Graduate

“PIP [Partners in Policymaking] has changed my life to become a better advocate in having a greater accessibility and knowledge in the many various resources locally and nationally, as well as making great connections. I’m left in ‘awe’ on the many presenters that were given to us and their in-depth knowledge they brought to the table.”

-Elizabeth Bennett, 2023 Partners in Policymaking Graduate

The Council

The Council is two-thirds self-advocates and family members. Council members lead the work and projects of MODDC. Council Members include: Mike Abel (University Centers for Excellence in Developmental Disabilities Representative), Rachel Baskerville (Self-Advocate), Kennimarie Bell (Parent Advocate), Lisa Crandall (Title V: Maternal and Child Health Representative), Cathy Enfield (Self-Advocate), Jennifer "Allie" Friedrich (Self-Advocate), Allen Haas (Title XIX Medicaid Representative), Heather Pugh (Workshop Agency Representative) Stacie Holt (Department of Elementary and Secondary Education), Sangyeal Lee (Parent Advocate), Lisa Liss (Parent Advocate), Jelani Logan (Protection and Advocacy Agency Representative), Todd Mayfield (Parent Advocate), Rebecca Jose (Rehabilitation Act Agency Representative), Jordanna McLeod (Division of Senior and Disability Services Representative), Lisa Nothaus (Division of Developmental Disabilities Representative), Animesh Shah (Parent Advocate), Kit Stahlberg (SelfAdvocate), Diana Willard (Self-Advocate, Chair), and Sharon Williams (Parent Advocate).

MODDC Staff:

Vicky Davidson, Executive Director

vdavidson@moddcouncil.org

Emily Hartley, Deputy Director

ehartley@moddcouncil.org

Leigh Anne Haun, Policy Coordinator

lhaun@moddouncil.org

Katheryne Staeger-Wilson, Project Coordinator

kstaeger-wilson@moddcouncil.org

Stacy Morse, Project Coordinator smorse@moddcouncil.org

Danielle Eads, Budget and Grants Coordinator

deads@moddcouncil.org

Sara Williamson, Administrative Coordinator

swilliamson@moddcouncil.org