It was just last week that my daughter's Case Manager, a dear friend of mine, passed away - followed two days later by my beloved Grandma, a woman who practically raised me and shaped me into the stubborn, strong-willed pain in the butt I am today... then NC icon Andy Griffith (Grandma always loved Andy). --Death has been busy.
This morning I woke to the tragic news of Steve Jordan's untimely death...
I had a great deal of respect for North Carolina's DHHS Director and sincerely liked Steve as a person and professional as I got to know him.
He was the one who responded to my initial letter on behalf of Governor Perdue.
Not long ago, Mr. Jordan told me after I spoke as a parent at the June 8th Behavioral Health and I/DD System Leadership Congress at UNC Chapel Hill with the Jordan Institute for Families that he bet I gave a hell of a closing argument... I told him I bet I would too if I were an attorney.
He was surprised to learn I wasn't; I guess that was quite a compliment.
Between breaks at the 'summit', I had an opportunity to chat with Mr. Jordan more at length. I told him of the various members of the NC General Assembly I had spoken to and how most were completely unaware of the information I brought to them and admittedly did not have a good understanding of what was going on. I mentioned the CAP I/DD 8M Public Comments to DMA from 2011 and asked if he had ever seen them; he said he had not. I told him my concerns about how parents were not being heard. I mentioned the difficulties families faced just trying to find the time to speak out, write, be heard and told him I idea of hosting a special "meet and greet" at the Museum of Natural Science across the street from the General Assembly - and how museum administrators shared with me that in their experience, members of the General Assembly never commit and just do not show up... Steve told me if I brought a group of parents together, that I had his word that he would come and listen. "They might not like all my answers, but I promise to show up and I promise to listen and do what I can to help."
I believed Steve Jordan to be a man of his word - a trait not as common these days as it should be - and believe he had a sincere desire to bring about a positive change where special populations are supported with dignity to the very best of our capabilities as a state and in a system where everyone had their needs met and no one fell through the cracks, not cashed out as sacrificial lambs.
At that same leadership congress, a meeting of the minds in the field of Mental Health, Developmental Disabilities and Substance Abuse which Steve was instrumental in orchestrating in an effort to bring all stakeholders to the table to bridge the divide and work together, attendees worked all day together brainstorming the key issues and considerations in what a successful system would like. We came together and worked together... At the end of the day, the common ideas, solutions and key concerns were compiled and presented to the large group. In my humble opinion, many of the best ideas regarding consumer and family input and ownership did not make it to the final draft as they appeared to be minority opinions.
Vicki Smith, Director of Disability Rights, NC, stood up in protest and pointed out that the deck was stacked with LME and MCO representatives as indicative of the results. She observed there was not one single DD citizen in the group, only a small handful of 5 or 6 parents, perhaps a few more who were agency provider representatives, DHHS figures and everyone else participating were figure heads (as well as their attorneys) from various Local Management Entities. She said something along the lines of - until consumers and families were fairly represented and heard, we would continue to repeat past mistakes and there would be no success.
And as Vicki spoke, I watched arms begin to cross defensively and felt the room fill up with tention.
A gentleman near me, a veteran provider, chuckled and shook his head. I inquired, stunned that he wasn't taking this seriously - seeing the critical need to protect the populations he served... He explained, "It's the same shit every time. Every time there is a new and improved system of change we have this same conversation and it just gets worse and worse every time. I'll believe it when I see it."
Another gentleman who had addressed the room earlier on the topic of substance abuse stood and commented that he frequently attended local Town Hall meetings on the Waiver and how he never saw many parents; he said he tried to encourage people to come and speak out but he didn't know why they didn't.
From the other side of the room I blurted out, "I know why and I'll be happy to explain." The microphone was passed to me... I don't recall my exact words, but my message was this:
Unless you live this life every day, you have NO idea what it's like raising, caring for, advocating and providing for a child with profound special needs and disabilities. You may work in the field, you may have special knowledge and insight of challenges and circumstances but you get to go home at the end of the day... We continue to live it every moment of every day. You cannot begin to imagine the undertaking it is just to make a trip to the grocery store with your child alone - carrying a backpack of stuff just in case - and hoping like hell you manage to get even the bare necessities without incident... Let alone packing up medical supplies and stem-toys, special foods and snacks, diapers and a change of clothes, wheelchairs and communication devices and special equipment to drive hours across the state to meet with representatives for 30 minutes without a meltdown or your child soiling their clothes - or sit in a Town Hall meeting for 2 hours with the expectation of being able to concentrate on what's going on... Often, when we do not have coverage - reliable, trustworthy staff to care for our children - we are prisoners in our own lives.
And yes, EVERY VOICE MUST BE HEARD! If the voice cannot come to the table, then the table MUST go to the voice... Until EVERY VOICE, every stakeholder, has equal ownership in this process, there will be remain a divide and there will be NO mutual success for anyone, least of all our children.
In his closing remarks, the first thing Steve Jordan said was, "Vicki is right."
He then relayed a lesson he learned the hard way from his first peloton (competitive cycling) event when he was "much younger and better looking"... How he had bolted away and left his team behind, rode well and finished in great time alone. His teammates gradually caught up to him behind the finish line as he stood quite pleased with himself and smiling - and said he was glad he still had his helmet on because the team leader came right up to him and hit him over the head, hard, telling him how stupid he was for leaving his team. Did you not realize the team leader asked the 'younger and better looking' Steve Jordan, that we work together and depend on each other to win as a team? Did you not know that when you break away from those who are counting on you, you began to work against us - and we all worked against you?
Amen Steve. Ride on.
