County Boards of DD and the People They Actually Serve

by, Renee Wood

            Ohio is one of the few, if not the only, State to have county boards of Developmental Disabilities (DD).  There are 88 county boards of DD in Ohio, these county boards use some local county dollars to supplement State dollars (such as Medicaid) in serving the needs of its residents with developmental disabilities.  There are benefits to having local entities involved in services for people with disabilities, there are also drawbacks.  To the extent these services govern the everyday lives of those living with DD, having county boards can be an asset because local entities have the ability to know the needs of each individual and find creative solutions rather than a “one size fits all”.  However, on the other hand, county boards are now quite invasive (through something called an Individual Service Plan – ISP) in the lives of individuals who may need services to live in the community, but may have the ability to make their own decisions and manage their own affairs. 

Having boards which set rules and policies for services provided to individuals with DD, but, at the same time, lack the majority the voting voices of people who actually live with DD, is rather phenomenal, given how American society is supposed to work. This is truly the definition of “Dictation without Representation”.  If any non-disabled person had to live under the Rules and policies, which those deciding these Rules don’t need to abide by, there would be a holy outcry, if not a war!  We (people with DD) are not “royal subjects” to those without disabilities, nor to our parents!  We, not only have the right, but the obligation, to be at the helm when it comes to planning money, policies and services that we, and we alone, will have to live with for the next decade!

            Bad people didn’t start this system.  The DD system was started when people who were disabled, had no rights, and therefore no voice!  It was started by parents of children, even for their adult children with disabilities, professionals and other good people concerned with the welfare of people born with, or acquiring a disability at a young age, to try to get us what we needed in order to live a decent life.  At the time it was primarily to prevent the abuse, neglect, exploitation or mistreatment by society that was happening.  Back in the day, before we had rights, one was not seen as equal to those without disabilities, so it didn’t matter how competent, articulate or able one was as a person with a disability, you literally did not have the right to speak for yourself, and therefore needed an advocate to represent you.  The system started with good people who cared.  The problem is the system didn’t grow with the times.  What was meant to spring us forward, is now holding us back.  I will even go as far as to say, for some, the system is arresting one’s development, and is a hangnail close to being abusive, whether intentional or not.

            How did we get to this place in history?  Although the people who cared about us having a decent life created an avenue by which this could happen, these same people still didn’t believe in our abilities to make decisions any more than the people in the greater society.  In other words, there was no exit strategy built into the system where people with DD would be expected to take more and more control over the system, and parents and others would start to be supporters and mentors for people with DD.  Eventually the system became for many of us, the very thing it was intended to prevent – no one to listen to our voices, no real control or power over the system, and living under the decisions of others.

Also, the second truth, which is the elephant in the room, is the fact that the non-disabled people just think it’s easier to do it for us, rather than working with us so we can do it ourselves.  No matter how competent someone with a speech impairment may be, or the ability of someone with a processing disorder is to make good decisions (once they have the assistance to understand everything involved), we will never be recognized as equally competent, therefore will always be glossed over for any meaningful input, until people without disabilities’ attitudes change.  Many of us need accommodations such as the patience of others to listen to us because we may have a speech impairment. Accommodations, such as listening more intently, or explaining things so people can understand, takes a little more time during meetings, and patience from our non-disabled colleagues sitting at the table as equal members on boards, or committees.  It strikes me as rather ironic (actually self-righteous) that these same members without DD, have demanded accommodations of time be added to the education system for tests for students with DD, but they can’t afford a few more minutes to listen, or help someone understand within their own meeting, so those individuals can be an integral part of the system that basically governs every aspect of their life!  What the hell!?

Although State Law has included people living with DD who receive services be appointed to county boards, no number of seats were mandated to be filled by them, as with seats required to be filled by parents and professionals.  As a result, no real energy was put into recruiting and mentoring people with DD to serve on county boards.  Furthermore, from 2012 when the first known person with DD was appointed to the Coshocton County Board until December of 2021, out of 616 seats to be appointed in the 88 counties throughout the state, the most seats that were filled by people with DD at the same time were 12, or 1.9%!  That’s not even “token” representation.  Yet, at any given time, almost half, if not more, of those seats are filled with parents of adults with DD.  We hear excuses such as, “We don’t know of any one with DD who can serve in that capacity”.  County Boards serve adults with DD. Logically this should mean that county boards have more access to people with DD than they have access to these individual’s parents, or equal access to both at least.  Unless, of course, the non-disabled who are the ones employed by county boards, finds it easier and more comfortable to develop relationships with parents than the people with DD who they serve.  If one works in the DD system and hasn’t developed a real friendship with someone with DD – well says something about how they view people with DD.  In any case, county boards have advocacy programs that serves people with DD.  Therefore, if county commissioners and probate judges can’t find qualified candidates to serve on county board through these programs, then the county boards need to re-evaluate those programs. 

Today, people with DD are biochemist, doctors, lawyers, teachers, architects, and CEOs of organizations, as well as store clerks, greeters, vet techs and parents, including some who have children with DD.  They are out there, and many are qualified to be on boards.  Some receive services, some do not need services, but still have a developmental disability.  The commissioners and probate judges don’t know who these individuals are.  In combination with that, people with DD don’t apply to be on county boards because they don’t know that they are allowed to serve as a voting member.  The reason why people with DD don’t apply is because they are seldom recruited, nor encouraged to apply for county board seats.  For decades now people with DD have taken a back seat to parents and professionals, so are unaware that now they can sit in the driver’s seat.  

It is true, not everyone, whether parent, professional or a person with DD, has the temperament or knowledge base, or the will to serve as a public servant.  But they have to know they have the right, not just in theory, but by witnessing it in reality – not just a few “lucky ones” but knowing it’s common.  I state this because whereas parents and professionals were/are qualified until proven otherwise, people with DD have been assumed unqualified until proven otherwise.  This mindset has to change.  One way to change what has become the norm in treating people as “less than”, is with legislation.  Otherwise, without legislation that requires an ongoing change to the past, appointing people with DD is just a nice thing people do for the “less thans”, until the novelty wears off, and things go back to the status quo.  Without legislation that gives us an equal number of seats on the boards to parents and professionals, then the next generation of people with DD will have to fight this battle all over again.  With this legislation, that will govern an equal number of seats be designated for people living with DD, the time for lasting change will start now!