Death of HHS Director Steve Jordan

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.

This is what I had said that day...

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.

In Remembrance of Marcie Pietras

Last Tuesday afternoon, I talked to my dear friend and case manager, Marcie Pietras.

We caught up a little on life, my kids, her furry kids and pig, what was going on with her and the results of her latest medical poking and prodding and test results (it's been a tough year for Marce), though she's never been one to talk about her own problems or issues, because she's always been one of those rare selfless souls who always cared more about others than herself... We talked about the pedicure and drinks we keep planning and getting together again when she was felt better...

Inevitably, as our calls have this year, talk turned to the Medicaid Waiver, politics and her deep concern for the welfare of "her families."

She told me she planned to sign on as a "Community Guide" just to make sure her families were taken care of and had the support and advocacy they needed as Wake and surrounding areas transitioned. Half-jokingly, I asked, "Seriously? What are they going to pay you? You'll be eating beans!" She said she didn't care; she was not going to abandon her families when they needed her most... "This thing is such a mess," she said, "I can't do that to these people. At least this way, I can still be there and help them..."

She told me she was amazed at all I have done with advocacy and that it's making a difference, people are starting to listen. I told her I hoped so and I just couldn't help myself. And then apologized that she hadn't kept in touch better, that she hadn't done more lately...

She told me her mom was flying in to help out and spend some time since she had been ill. I told her to enjoy and let someone else take care of her for a change the way she takes care of everyone else. We said we'd catch up soon, that we'd get together again... I told her to let me know if there was anything she needed or anything I could do. "I'll be okay."

But that's Marcie.

And the last thing I said to her before we hung up was that I loved her.
The very last words I would get to say to her in this life...

Less than 24 hours later, Marcie was gone.
She was but a wise old soul of 31.

She left behind the love of her life, a soldier and Raleigh Police Officer - whom she often drug to "her kids'" houses in uniform so they could sit in the patrol car - and countless other family and friends now left with giant holes in our hearts. And her beloved special families.

There are many, many reasons I adored Marcie. Sure we met professionally as she was my Isabel's case manager, but to know her was to love her for what she loved, she loved with her ALL - and what she loved with her all, she fought for, never compromising who she was nor what she believed in.

She was a shining example of the best of human spirit and truly an angel among us.

I got the call Wednesday morning, June 27th, while having breakfast with my wise little 5 year old son... He asked with such concern, "Mommie, why are you crying?"

Before it could even occur to me that this topic was uncharted territory, I told him, "Baby, Miss Marcie died."

Without so much as a pause, he said, "She's with the angels now, right Mommie?"

"Yes, baby, I believe she is."

And to that my dear sweet boy replied, "Maybe God will make her an archangel and then she will be Archangel Marcie."

I told him that I thought Miss Marcie would make an most excellent archangel.

And indeed she would.

Marcie Pietras was so very much more than a Case Manager, not just to my family, but to many, many others... a dear friend, protector, and advocate for those without a voice as well as those whose exhausted voices had long since faded in defeat. She was a fiery spirit who always gave her all and always went above and beyond in everything she did, especially when it came to her families.

I once had a Wake County Public School professional tell me after a four hour long IEP, "It's just not fair that one child should get more services than another just because her parent is a better advocate!"

I looked her straight in the eye and replied, "You're exactly right!" --No parent should have to fight this hard to make sure their child is taken care of and gets everything they need and deserve.

And that's pretty much how Marcie saw it too. --She fought tirelessly for the families she loved up until her last moments. She fought for what she believed in - what she knew in her heart of hearts was right and just. She knew that indeed it takes a village to care for and protect special people for they are here as teachers... And she saw these amazing and beautiful children in their truest light - she saw them as angels here to teach us about ourselves and reconnect us with the goodness of life and the things that really matter at the end of the day.

That is what made her Marcie.

There is absolutely nothing anyone can tell me that will convince me that any Care Coordinator, call center service, nor Community Guide could even begin to fill her shoes... and certainly not the gaping hole left in the hearts of the many who loved her.