March 21, 2014

by: Guest Contributor

Developmental Disability Awareness and Advocacy Day – March 4, 2014

This week’s blog post was written by two parents whose children receive therapy services at UCP of Greater Cleveland. They both attended the Developmental Disability Awareness and Advocacy Day on March 4 in Columbus. Read on to hear about each of their experiences at this inspiring event.

Tuesday, March 4th, 2014 was Developmental Disabilities (DD) Awareness and Advocacy Day at the Ohio Statehouse in Columbus.  This year’s theme was “What Are You Waiting For?”

The day is organized by The DD Awareness and Advocacy Day Planning Committee, a sub-committee of the Ohio Developmental Disabilities Council (ODDC).  The ODDC is one of a national network of state councils consisting of at least 30 members appointed by the governor, whose goal is to educate policymakers about how state governments services and policies can be improved, expanded, or strengthened on behalf of people with disabilities.

The day began with a check-in process and pre-registration is encouraged.  During pre-registration, attendees may request to have appointments scheduled to meet with their legislators, which is highly recommended.  It is during check-in that attendees can pick up Fact Sheets on each of the four key legislative issues that have been identified by the committee.   This approach helps ensure information presented to legislators is clear and concise;  attendees become one voice, sharing in the same mission for the same issues.

After check-in, the day begins with a series of speakers that are very purposefully organized around each of the four issues, as well as the theme of the day, “What Are You Waiting For?”   Speakers are both people with a developmental disability who share their personal experiences, as well as advocates.

The four key issues raised at this year’s Advocacy Day were:

1)      Visitability, House Bill (HB) 84:  There are no current standards in place for accessibility of single-family housing. HB 84 proposes to give homeowners a $5,000 tax credit for including Visitability when building a new home, or for modifying their existing home with Visitability features.  The tax credit would be calculated at one-half the actual cost of the home modification but capped at $5,000

2)      Accessible Parking Signs, House Bill 265:  Proposes to change the use of “handicapped” to the term “accessible” – a more respective language.  This would only impact new or replacement signage.

3)      Medicaid Asset Limit:  States are allowed to link Medicaid eligibility for the Aged, Blind, and Disabled (ABD) population to SSI, however Ohio decided not use the SSI determination as a Medicaid eligibility guideline.  Instead Ohio is stricter than the federal government when deciding who is eligible for Medicaid.  For states that do use the SSI guideline, the amount of money a person is able to keep and still be Medicaid eligible is $2,000.  However, in Ohio, that limit is currently only $1500.  The $1500 limit was established in 1974.  Accounting for inflation, that would be equivalent to $7,088 today.  Persons with disabilities who are working, would like to be able to maintain savings of over $1500 and the ABD group is the only group that is subject to this Asset/Resource limit.  If a person with a disability  were participating in the Medicaid Buy-In Program for Workers with Disabilities with an asset limit of over $11,000, and aged out of the program, they would have to spend down their savings to $1500 to remain eligible for Medicaid.  This policy does not encourage people with disabilities to work and become independent.

4)      Home and Community Based Services (HCBS) Waivers – Waiting List:  There are currently over 40,000 people with developmental disabilities in Ohio waiting for a HCBS waiver. Waivers were created in 1981 to provide people with disabilities an alternative to living in an institutional setting such as a developmental center, Intermediate Care Facility, or nursing facility.  It is reported that the median waiting time in Ohio for an individual seeking a waiver is 6.4 years.  15% of these waiting list individuals said they had no future area of need, and 46% said they had no current area of need.  However, more than 1,000 individuals will lose the support of their primary care giver each year due to age.  The evidence suggests the current HCBS system cannot meet existing demand without additional help from the State, and there is no current plan in place to reduce the waiting list.  An investment of $32.9 Million in state funding over the biennium would serve a minimum of 2,200 individuals, but still is not enough.

After the morning agenda concluded, each person had the afternoon to attend their pre-scheduled meetings with their legislators to talk about these four issues, or any other issues of their choice.  Participants were urged to share their personal stories to help make a larger impact.

I participated in meetings with both my Senator Shirley Smith and Representative Barbara Boyd, and in both cases spoke with the Legislative Assistant  (LA).  I chose to speak about all the issues with the exception of the Accessible issue, as I thought my time would be limited and HB 265 is a highly supported bi-partisan bill.  Both meetings were very different, where one LA seemed blasé, and the other took a handful of notes and seemed very interested, gave me his card, and asked that I contact him in a few weeks for follow up.

Having the morning session and talking points certainly made an overwhelming situation seem very manageable.  I am happy to have had the opportunity to attend this day and plan to attend future sessions.  I came away from the day feeling a much deeper confidence in my ability to talk with my senators and representatives about issues important to me and my family.  The information I was able to learn about current legislation, or lack thereof, around key DD issues provided me with a sense of involvement and empowerment that is an important part of being an informed citizen in the DD community.   I would urge anyone who has legislative concerns to attend this type of session, whether around DD or other key legislative issues.  You will never regret being an involved and informed citizen.

Tania Younkin
UCP of Greater Cleveland Parent and Secretary of the Cuyahoga County Board of Developmental Disabilities

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“They always say time changes things, but you actually have to change them yourself.”
-Andy Warhol

Change is the process by which things are altered or modified.  Advocacy is influencing public policy toward change.  Sometimes, in the Developmental Disability Community, the people in the best position to advocate for change are not the lobbyists, or the government and agency employees, but the people who deal with a disability on a daily basis. There is something to be said for the influence of a personal touch and a benefit to sharing your own life experience. But for many, myself included, speaking with policymakers can be a daunting task.

March is Developmental Disability Awareness Month.  In keeping with that theme, the Public Policy Committee of the Ohio Developmental Disability Council provides an annual grant to run a DD Awareness and Advocacy Day at the Ohio Statehouse.  This advocacy day provides a great opportunity for people to get valuable face time with their legislators and get assisted practice speaking with them about important public policy issues facing the disability community. This year, the event was held on March 4th and the theme of the day was, “What Are You Waiting For?”

Advocacy day kicked-off in the Rotunda with a program of speakers.  They shared their personal stories, in keeping with the theme, of how they achieved their dreams and goals by choosing action over waiting for assistance.  The heartwarming speeches demonstrated that there are many things people can accomplish on their own, even if they face challenges, if they persevere – like moving out on their own, owning a business, attending college, and even directing a play.  Over 400 participants, typically caregivers, families and self-advocates, were inspired by these people to take some action on their own behalf by meeting with their legislators and discussing some key issues affecting the DD community later that morning.

Registration for the event was required and staff assisted by making arrangements for legislative meeting appointments s and providing fact-sheets and talking points for the four pre-determined issues: 1. Medicaid Asset Limits; 2. Waiver Waiting Lists; 3. Accessible Parking Signs; and 4. Visitibility Tax Credits.  Many participants each year are completely new to this process, so they are provided with information on each of the issues, along with an introductory script, but they are also encouraged to talk about their own concerns and to tell personal stories in their legislative meetings.

It is a great training ground and good jumping off point for anyone who has thought about trying to make changes in public policy, or who has personal issues about disability laws and regulations that affect them.  It’s a day where you are given the opportunity to have a voice and be heard while, at the same time, having an organization and staff available to assist you and answer any questions you may have.  I highly recommend the experience to anyone whose lives are touched by a disability.  Look for this event next March or contact Paul Jarvis at the Ohio Developmental Disability Council ( to be added to their email list.

Diane Cox
UCP of Greater Cleveland Parent and Chair of the Public Policy Committee of the Ohio Developmental Disability Council

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