On Wednesday, June 20th, my daughter, her helper Kim, and I attended the DHHS Waiver Advisory Committee (DWAC) Meeting. After lengthy powerpoint presentations by DMA's Behavioral Health Policy Chief, Kellie Crosby, and Piedmont Behavioral Health's CEO, Pam Shipman, the DWAC meeting was opened for public comment... the time that consumers, advocates, caregivers and parents are able to express concerns in 3 minute increments.
This was the second DWAC meeting I have attended and having no shortage of words, I find that 3 minutes is hardly ample time for anyone to present much of anything credibly nor share information, stories, experiences, or supporting documents. Not on a topic of this magnitude with such a vast variety of concerns and tales. Some of my fellow public commenters drove to Raleigh from as far as Asheville and Wilmington to have their 3 minutes of voice heard.
On Wednesday, I requested of the DWAC Committee the opportunity to present on behalf of parents.
I also signed my non-verbal daughter, Isabel, up to speak...
Following my comments (below), Isabel proudly strutted up to the podium, leaned in close, put her mouth right on the microphone and blew. I'm not certain who was more amused by her antics, Isabel or her attentive audience.
And in that moment, the room visibly softened... as though for that brief moment, we all remembered the real reasons that brought us together - for that brief moment, we had a commonality, a shared goal and purpose... We were all on the same team, one village, for one brief moment.
And it does take a village.
With my prompting, she showed the board members the ASL signs for "friend" and "help." I asked her if Miss Kim was her friend that helped her, she responded by signing "yes." I asked if she loved Miss Kim, she again responded "yes" and then told us she was finished, turned around and grabbed her Happy Meal box and sat down.
Unlike her mom, Isabel is a lady of few words - however, in my humble and biased opinion, she delivered the most powerful message of all that day.
My Speaking Notes to the DWAC Committee
Before I begin, I'd just like to say for the record:
- The added position / role of Community Guide is a JOKE. I guarantee I - or most any parent or Direct Care Support Staff in this room - have more knowledge and resources than your best Community Guide.
- Call Center / Telephone Support is an INSULT to every PARENT in this room - an insult not unlike being spat upon.
Recipients and families continue to have NO failsafe, constitutionally protected Due Process rights regarding appeals to a third party with the authority to make a final decision.
While the Regulatory Reform Act of 2011 does authorize the ALJ final authority over Medicaid CAP decisions as of January 1, 2012, the powers that be cannot agree on the waiver language to CMS which will allow this to happen, thus recipients still have NO DUE PROCESS save hiring counsel. --My husband is an attorney & WE could not afford a 10-20K retainer to file a lawsuit against the state.
I’ll be happy to explain in more detail, but I urge you to review the Open Letter and Outline that I forwarded to Mr. Marsh again today for redistribution to the Committee - if you’re impatient, you can also find the information on my blog - and I’ll be happy to provide you with the URL.
Recipients and families, those of us who have the MOST to lose and suffer, continue to NOT be heard.
Has anyone here seen or reviewed any of the 540 Public Comments to DMA in 2011 that Mary Short just spoke of? -- If you haven’t, it’s also on the blog.
I’d like to respectfully request of the Committee permission to present as a parent representative at the next DWAC meeting. I’m sure other parents would like that opportunity also. Legislative and Committee members must hear from the folks not paid to sit in the front rows with their hands up begging to be called upon.
Recipients and families, those of us who have the MOST to lose and suffer, continue to NOT have equal ownership in insuring the success of this mental health overhaul.
Until every stakeholder has equal voice and equal ownership in this process, there will be no bridging of this divide and there will be no mutual success.
The recent hot topic, if you read the news, is HB 1075 which authorizes LME / MCO Director’s giving themselves a raise among other things - if you haven’t seen it, it’s on the blog.
Regarding this HB, Representative Dollar addressed the concerns of his GA colleagues in a recent legislative meeting by assuring them that the bill could always be changed later...
We continue to trim the fat off the bottom of this dynamic. There is no more fat to trim! Direct care staff make nothing for the jobs they do & will be making even less as hours continue to be shifted to lower paying reimbursement rates. --Again, see my outline and supporting documents; on the blog.
Per DOJ findings -- While the state scurries to reintegrate one population of citizens from inappropriate placements in state facilities back into community settings … we are moving another very vulnerable population of citizens living at home with their families, slowly but steadily, in the other direction - into crisis.
WE CANNOT FILL A GAP BY DIGGING A BIGGER HOLE!
It’s NOT ENOUGH that we can go back and make changes AFTER the damage has been done!
Children and Families, like those in this room today, may never recover from such damage -- it has taken them a lifetime to acquire the skills they have today.
And there WILL be damage.
Let me say that again: THERE WILL BE DAMAGE.Think: “The Titanic.” --They knew. They were warned.
And there was no tip to that iceberg either...
Thank you.
