2022-23 Ohio DD Council Annual Report

COUNCIL MEMBERS

Amanda Via

Annette Wood

Bobbi Krabill

Brenda Brandon

Brian Veith

Courtney Hineman

Debbie Lozano

Ellie Jazi

Emilia Jackson

Isabel Ganz

Javan Brown

Jennifer Kucera

Jodi Young

John Banchy

Ilka Riddle

Kari Jones

Kellie Brown

Kellie McCain

Kerstin Sjoberg

Krystal Albright

Mark Smith

Matt Harrison

Matthew LaFontaine

STAFF

Carolyn Knight

Donna Foster

Gary Groom

Gilbrina Dillon

Leslie Connelly

Meagan Alwood

Michael Denlinger

Molly Dible

Monica McCain

Morgan Deavers

Pamela Green

Paula Rabidoux

Rhonda Rich

Shannon Komisarek

Timothy Newell

Vicki Jenkins

William “Bill” Ackman

Paul Jarvis

Rebecca Bates

Robin Shipp

Carolyn

Michael Denlinger, Chair

Knight, Executive Director

OUR MISSION OUR WORK

The Ohio Developmental Disabilities Council (Ohio DD Council) aims to make life better for people with developmental disabilities and their families. The Council works under federal laws and gets funding from the government. The Council focuses on helping individuals with developmental disabilities become more independent and included in their communities. It’s part of a network in Ohio that helps people with developmental disabilities. The Council works closely with the Ohio Department of Developmental Disabilities. Most of its members, who are chosen by the Governor, either have developmental disabilities themselves or are family members of someone with a developmental disability. Together, they identify what problems need fixing for people with developmental disabilities in Ohio. They make a plan every five years to address these issues and use grants to make changes that help people live more independently and be part of their communities.

5 YEAR STATE PLAN

The Ohio DD Council receives federal funding for innovative advocacy, capacity building and systems change activities. These activities are designed to contribute to a coordinated system of services, supports and other assistance that is centered around and driven by individuals with developmental disabilities and their families.

Council’s work is driven by its Five-Year State Plan covering federal fiscal years 2022-2026. The plan was developed with input from people with developmental disabilities, family members and interested stakeholders from around the state. All projects described in the plan adhere to DD Council’s philosophy that people with developmental disabilities have the right to be productive, interdependent members of their communities and of society at large. The work in this report represents the second year of the Five-Year State Plan.

COUNCIL PROJECT HIGHLIGHTS

The Ohio DD Council receives federal funding for innovative advocacy, capacity building and systems change activities. These activities are designed to contribute to a coordinated system of services, supports and other assistance that is centered around and driven by individuals with developmental disabilities and their families.

CASA SPEECH

Through the Ohio DD Council discretionary fund, Casa Speech in Columbus, Ohio received a grant to provide special assistance to Hispanic parents and their children with Autism. The grant was used to develop a six-week summer social group for children ages three to seven, providing them a chance to interact with other Spanishspeaking or bilingual children. Through the summer, three groups have been offered each week with specific themes. One session incorporated animals in which dogs and chickens were brought in for viewing and petting. Another theme was firefighting, which used water play to help the children become more comfortable with water and wetness by putting out laminated fire flames. The sessions also featured music, food and more.

Casa Speech provides four therapists for each participating child.

“The therapists can see what sensory needs each child has and are able to provide them with what they need, whether it is hugs, pressure, etc.,”

explains Cassanda Guarneros Rosile, owner of Casa Speech.

The Ohio DD Council funds are specifically used for therapists, sensory materials, craft tools, etc. In addition, monies pay for educational professionals who share information with the parents on topics such as chemical imbalances and nutrition, Individualized Education Programs (IEPs), introduction of new foods to a child’s

CASA SPEECH

Guarneros Rosile loves seeing the children’s progress during the social interactions.

She shared about one non-verbal four-year-old who would become easily overstimulated and need to be with a therapist constantly. But through time, the child’s needs were met, and he now freely roams the room and exercises greater independence. Another young boy who could not follow directions was introduced to music therapy and has begun to listen to the music and do what it says, like tap his foot.

“We focus on the interaction. One goal is that the children play with, not just next to, the other children. We provide the interaction they are missing,” says Gaureneros Rosile. “Through different approaches, we learn what each child will benefit from and what ideas and skills parents can use at home with their child.”

HIGHLIGHTING PROGRAM PERFORMANCE

THE STATE OPERATING BUDGET

The July 3, 2023 state budget approved a major investment of $1.5 billion for Ohio’s DD system. Advocacy efforts in the DD community led to historic increases for DSP wages. The budget also requires county boards of DD to include the individuals they serve to ensure their voices are heard.

FEDERAL LEGISLATIVE

ADVOCACY PARTNERSHIP

Members of the Ohio Developmental Disabilities Council joined representatives from Ohio’s County Boards of Developmental Disabilities and the Ohio Provider Resource Association for an Ohio-led federal policy training and day of advocacy on Capitol Hill.

Advocates traveled to DC to talk about federal policies that affect the daily lives of people with developmental disabilities, including a bill that was introduced recently by US Senator Sherrod Brown to increase the asset limits for people who rely on Supplemental Security Income (SSI). The SSI Savings Penalty Elimination Act (S.2767) was introduced to increase the asset limit from $2,000 to $10,000 for individuals and from $3,000 to $20,000 for married couples and to adjust the limit annually based on inflation.

Michael Denlinger, chairman of the Ohio DD Council, was one of five Council members in attendance. Denlinger was able to meet with staff from his congressional district and attend meetings with Brown’s office and others.

“I cannot stress enough how important it is for people with disabilities to be talking with their legislators,”

said Denlinger. “It’s

great to have an opportunity to tell my story directly to them and to really explain why certain policies need changed.”

FEDERAL LEGISLATIVE ADVOCACY PARTNERSHIP

The two-day event was supported by a grant from the Ohio Developmental Disabilities Council and by a donation from CareSource. Planning and logistics for the event was conducted by LMK Advocacy and included a half day of policy briefings from the National Association of Councils on Developmental Disabilities (NACDD), the American Network of Community Options and Resources (ANCOR), and the American Association of People with Disabilities (AAPD).

Kari Jones, chair of the Council’s Public Policy Committee and executive director for the Down Syndrome Association of Central Ohio, said this event was one of the best experiences she’s had. “I have done many ‘fly-in’ type of events and can say, hands down, the training provided to all of the advocates was off the charts,” said Jones. “The overview on best practices and details of legislative advocacy initiatives equipped us to take on Capitol Hill feeling empowered and excited to advocate.”

In addition to representatives from the Ohio DD Council, County Boards of Developmental Disabilities and the Ohio Provider Resource Association, LMK Advocacy was able to select three self-advocates from around Ohio to attend. For one self-advocate, it was their first time in Washington, DC.

“This grant enabled us to support a few folks that aren’t directly tied to an organization and who may not have a lot of resources for travel to be able to participate,” said Lori Kershner, chief executive officer for LMK Advocacy. “Being able to give these three people with developmental disabilities the experience of DC and the ability to participate like everyone else in our system of government is a rewarding aspect of this grant.”

The Federal Legislative Advocacy Partnership grant will be offered again in 2025.

THE HUMAN TRAFFICKING WHITE

PAPER

The Switch Network Anti-Trafficking Network created a white paper titled “Bridging the Gap for Trafficked Women of Color with Disabilities.” The paper discusses the experiences of Black, Indigenous, People of Color (BIPOC) women with disabilities who have been trafficked. These women served as experts and helped produce knowledge on this topic. They guided the project from start to finish, using their voices and expertise to stress the importance of letting BIPOC individuals educate others about their experiences.

OHIO DD TALKS PODCAST

Created through the Public Awareness grantee, Ohio DD Talks is a podcast series featuring stories and conversations with Ohioans with developmental disabilities about current issues that are important to them. Advocates Shari Cooper and Marci Straughter are the hosts. All episodes are found on the Council’s YouTube channel and several audio streaming services. In FY2023, the podcast featured several members of the DD community and covered topics such as advocacy & accessibility in the legal system; tips for talking with your legislator; and other advocacy efforts.

DEVELOPMENTAL DISABILITIES AWARENESS AND ADVOCACY DAY

The Developmental Disability (DD) Awareness and Advocacy Day is an annual event that has taken place for more than a decade at the Ohio Statehouse in March which is DD Awareness Month. The event is meant to educate and empower Ohioans with developmental disabilities, their family members and other community allies to come together on a single day to advocate policy issues which impact the lives of people with developmental disabilities.

One of Council’s goals is to educate policymakers about how state government services and policies can be improved, expanded, or strengthened on behalf of people with disabilities. It is important for the policymakers of Ohio to hear the voices of people with disabilities and their families through this event.

The design of the DD Awareness and Advocacy Day is guided by a team of organizations who make up a planning committee.

HIGHLIGHTING PROGRAM PERFORMANCE

MEETING WITH LEGISLATORS

As a direct outcome of DD Awareness and Advocacy Day. 174 individuals, comprising both individuals with developmental disabilities and their family members, engaged directly with their legislative representatives.

OHIO ALLIANCE OF DIRECT SUPPORT PROFESSIONALS

The Ohio Alliance of Direct Support Professionals (OADSP) and the Ohio Department of Developmental Disabilities (DODD) collaborated on a “DSP White Paper,” proposing a tiered system for DSPs to improve recognition and compensation. They recommended establishing a Workforce Crisis Task Force (WCTF) to address staffing shortages and enhance conditions. Year two, funded in part by the Ohio Developmental Disabilities Council, will focus on implementing selected recommendations from the DSP White Paper, including expanding training programs and launching a DSP Ambassador Program.

EMPOWERING PEOPLE WITH DISABILITIES

The Ohio Self Determination Association and Services for Independent Living (SIL) created a Young Adult Council (YAC) led by individuals with developmental disabilities, aiming to offer practical policymaking experiences. This initiative helps participants develop decision-making and problem-solving skills while advocating for systemic changes on local, state, and national levels. SIL engaged participants through marketing and training sessions, resulting in 100% reporting increased advocacy. They also extended the Autism Self-Advocacy Program (ASAP) to 10 weeks, allowing for more participant processing time. The project encouraged family and individual involvement in decision-making and underwent rigorous monitoring and evaluation to ensure effectiveness.

HOCKING ATHENS PERRY COMMUNITY ACTION

Through a grant from the Ohio DD Council, Hocking Athens Perry Community Action (HAPCAP) created the Athens on Demand Transit (AODT) project. This initiative provides safe, affordable, and accessible transportation to rural communities in Athens County, Ohio. Residents like Christine Mohr have benefited greatly from the project, gaining independence and access to surrounding communities. When Christine faced health issues that prevented her from driving after starting a new job, she turned to AODT for assistance. Mohr shared her story with the Hocking Athens Perry Community Action group. She wrote:

“Your drivers truly make a difference in my life...”

HIGHLIGHTING PROGRAM PERFORMANCE FAMILY CONNECTION

In the midst of service delivery priorities, a man utilizing HAPCAP’s out-of-county trips to visit his mother highlights the profound impact of their support on enabling connections for those with disabilities, underscoring the significance of the opportunity provided.

“...You all have allowed me to keep my dignity, my independence, take care of myself and not burden an already overtaxed system...”

More than that, it is a warm welcoming smile first thing in the morning or at the end of an exhaustive day! Great conversation and sharing special personal stories and times. Let me tell you what an INCREDIBLE, diverse, awe inspiring group of individuals. When I tell you it’s a privilege to know I have them in my life, it really is! Love their histories (many are retired), their interests, family stories...just pure kindness and compassion!”

Through grants like those to HAPCAP, the Ohio DD Council fulfills its mission to create a more inclusive Ohio with people with developmental disabilities where they can live, work, play in the community of their choice.

ACCESSING BETTER CHILDCARE

The Ohio DD Council collaborated with stakeholders, playing a role in the development of a new program by the Governor’s office called Ohio PROMISE (Promote Resources, Opportunities, and Meaningful Inclusion through Support and Education) program. Additionally, OCALI established the Center for Excellence in Inclusion for the Young Child. Grantees closely collaborated with OCALI and ODJFS staff, with Tracey Chestnut from ODJFS highlighting the timing of this research was “impeccable” in terms of helping them in decision-making efforts.

COUNCIL PUBLICATIONS

The Ohio Developmental Disabilities Council provides free publications addressing vital topics such as supported decision making, guardianship, estate planning, and council membership. These resources offer guidance for individuals with developmental disabilities and their families, empowering them to navigate legal and advocacy challenges effectively while promoting independence and community engagement across Ohio.

COUNCIL PUBLICATION DISTRIBUTION

From January to September 2023, the Council distributed numerous publications statewide, reaching all regions of the state. These resources were available both at events and through online requests.

Publication Distribution in Ohio

Alphabet Soup

Annual Report 2019-20

Estate and Future Planning

Guardianship in Ohio

Sudden Impact

Membership Cards

Person First Bookmarks

Representative Payee Handbook

Supported Decision Making and Guardianship

A total of 3,641* publications were distributed across Ohio from January-September 2023

This publication is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $2,846,720 with 96 percent funded by ACL/ HHS and 4 percent funded by non-government source(s). The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.