My Perspective – Living in the Intellectual/Developmental Disabilities System

By Jeanie Benfield assisted by Jo Booms

I value my Medicaid and realize I’d be in an institution without it. But it’s not enough to create a system to serve people with Intellectual and/or Developmental Disabilities (IDD) and then let it run amok because society doesn’t value the people the system was set up to serve.  I am now lucky enough to have services through excellent agencies – but for most of my life, I didn’t.  Most people don’t have any idea how bad it is in the IDD system. The problems are due to massive problems in oversight plus the system’s refusal to pay direct care workers a skilled-job wage. The wage problem makes it so that people with IDD often have no choice but to receive services from the very people they should most be protected from. When we do come across outstanding direct care workers, we value them – but the system as a whole does not. I have an assistant, Jo. Jo has worked with me for 21 years in various capacities (paid and unpaid). I have a severe speech impairment due to my disability.  Jo is one of only a few people who can interpret for me on the level I need. The system pays her $12/hour to do this. I can trust her with my life, and the system pays her $12/hour.

It is difficult to find great direct care workers who will stay in this field; they’re not paid a living wage and the system makes the job hellishly stressful. The lack of quality direct care workers has a horrible effect on quality of life for people with IDD. You’d think that overseeing agencies would know about these problems – but they don’t, because what the agencies oversee is largely paperwork. If the paperwork’s ok, the overseeing agencies think that means the clients have great lives. What the system doesn’t understand is that what doesn’t make it onto paper doesn’t get reflected in the statistics. Abusive direct care workers aren’t going to write on an Incident Report (IR) that the reason Client A hit Client B is because the direct care worker was rude and insulting to Client A. This is a true story; I’m Client B. Client A is a sweet person whom I love dearly. She asked the worker if she could go trick-or-treating. The worker could have politely and respectfully explained that Client A is too old to go trick-or treating and then said something like, “You’re always so good at helping give out candy when trick-or-treaters come to the door. I was really hoping you could help me out with that”, or the staff could have reminded Client A that she always has a great time at the ARC Halloween party and that she receives many compliments on her costumes. There are any number of ways the worker could have redirected Client A appropriately. But instead, the worker chose to speak to her scathingly. Disabilities don’t prevent people from having feelings. When Client A gets upset, she flails her hands like a toddler. I happened to be in the way. It wasn’t intended as a hit, and didn’t hurt or leave a mark. But the staff counted it as a hit, wrote an IR, and tried to pressure me into calling the police and pressing charges because “Client A needs to know there are consequences when she hits”. I was like, ‘What the hell???’ I refused. The staff got mad, but oh well. I’m not about to press charges against another client because of something a worker did wrong. I told the residential director what really happened, so Client A ended up not being in trouble over it. But when there’s no one to witness or report or when there’s no one who cares enough to take witnesses seriously, clients get in trouble, daily, for crap that staff pull. Many clients are on behavioral programs to address, repress, and extinguish their understandable reactions to being treated like crap by the direct care workers who are supposed to be providing them with quality care. Many of these same clients are on psychotropic meds to make them acquiesce to workers treating them inappropriately on a daily basis.

It’s not right, but officials don’t want to hear about the problems. When clients, family members, and guardians try to tell state-level officials about problems in the IDD system, the state dismisses our testimony as “anecdotes”. We are not anecdotes. We are human beings who, through the blessing of Medicaid, are trying to experience the inalienable rights granted to us by our country’s constitution. Medicaid is a huge step forward in our quest for equality. But existence of the program alone isn’t enough; it must deliver services in ways that uphold the dignity of the human beings it serves.

**All Blogs reflect the opinions/experiences of people with disabilities or family members of people with disabilities. They do not reflect CCDC’s official position on any portion of Medicaid services.”