Mary K. Short is a strong and active advocate and the parent caregiver of an adult DD recipient with profound needs. She fights tirelessly for the rights of her daughter, Katie and other special families, as well as a great deal of time keeping folks informed! Below is her mail to her parent list (in blue) which includes her 6/4 legislative correspondence regarding the 8M Clinical Coverage Policy proposals and Public Comments to DMA. Posted with Mary's permission.
Mary and her daughter live in NC House District 88 and Senate District 42. Her daughter is being served by Smoky Mountain LME.
Parent Perspectives
and Legislative Correspondence
From: Mary K. Short June 5, 2012
Hello all. As I have been trying to stop the further implementation of the NC Innovations waiver, one of the things I have repeatedly told the Members of the NC General Assembly (NCGA) is that the Department and Divisions DO NOT LISTEN TO FAMILIES. One of the things that had been bothering me is the fact that "Proposed Clinical Policy 8M CAP-IDD" was never posted to the DMA web site as approved. You should recall that it was posted for public comments twice, for a 45-Day period (May 12, 2011 - June 26, 2011) and then again for a 15-Day period (July 28, 2011 - August 11, 2011). The 15-Day comment period was when Home Supports was eliminated! I submitted a Freedom Of Information Act request (FOIA) and after some delay by the Department and Divisions, I did actually receive the documents! They sent me Word file documents of ALL the public comment they received. The links below are to those documents. PLEASE BE AWARE THAT I HAVE NOT REMOVED ANY INFORMATION FROM THE PUBLIC COMMENT DOCUMENTS. They contain email addresses, addresses, phone numbers, WHATEVER was submitted is what was released. I have not edited the information in any way.
Hello all. As I have been trying to stop the further implementation of the NC Innovations waiver, one of the things I have repeatedly told the Members of the NC General Assembly (NCGA) is that the Department and Divisions DO NOT LISTEN TO FAMILIES. One of the things that had been bothering me is the fact that "Proposed Clinical Policy 8M CAP-IDD" was never posted to the DMA web site as approved. You should recall that it was posted for public comments twice, for a 45-Day period (May 12, 2011 - June 26, 2011) and then again for a 15-Day period (July 28, 2011 - August 11, 2011). The 15-Day comment period was when Home Supports was eliminated! I submitted a Freedom Of Information Act request (FOIA) and after some delay by the Department and Divisions, I did actually receive the documents! They sent me Word file documents of ALL the public comment they received. The links below are to those documents. PLEASE BE AWARE THAT I HAVE NOT REMOVED ANY INFORMATION FROM THE PUBLIC COMMENT DOCUMENTS. They contain email addresses, addresses, phone numbers, WHATEVER was submitted is what was released. I have not edited the information in any way.
https://www.sugarsync.com/pf/D6195569_4698706_718588 (Part 1: 539 pages; 439 comments; 15 day comment period.)
https://www.sugarsync.com/pf/D6195569_4698706_718581 (Part 2: 79 pages; 101 comments; 45 day comment period.)
They are tremendously moving to read. I want to thank every single family who submitted comments. I want to add that MOST of the comments are NOT from people who are directly on my email list. I know some of you forward my emails, and so, I want to thank you for doing that. I don't care if the comments are from my email group or members of The Arc or UCP or Case Management providers or service providers, whoever, I am just thankful for the families who did comment. Except for two that I remember, they were in COMPLETE AND TOTAL OPPOSITION to the elimination of Home Supports, the implementation of a 40-hour policy, and opposed denying the use of Respite on the same day as Home Supports or Residential Supports.
After having all of it printed and READING EVERY SINGLE PAGE, I sent the following email:
From: MaryKShort@aol.com
To: Governor Beverly Perdue <governor.office@nc.gov>,
Senate President Pro Tempore Phil Berger <Phil.Berger@ncleg.net>,
House Speaker Thom Tillis <Thom.Tillis@ncleg.net>,
Senator Louis Pate <louis.pate@ncleg.net>,
Representative Justin P. Burr <justin.burr@ncleg.net>,
Representative Nelson Dollar <nelson.dollar@ncleg.net>,
Representative Martha Alexander <martha.alexander@ncleg.net>,
Representative William Brisson <william.brisson@ncleg.net>,
Representative William A. Current, Sr. <bill.current@ncleg.net>,
Representative Mark W. Hollo <mark.hollo@ncleg.net>,
Representative Pat B. Hurley <pat.hurley@ncleg.net>,
Representative Bert Jones <bert.jones@ncleg.net>,
Representative Marian McLawhorn <marian.mclawhorn@ncleg.net>,
Representative Tom Murry <tom.murry@ncleg.net>,
Representative Fred F. Steen, II <fred.steen@ncleg.net,
Senator Austin Allran <austin.allran@ncleg.net>,
Senator Doug Berger <doug.berger@ncleg.net>,
Senator Stan Bingham <stan.bingham@ncleg.net>,
Senator Harris Blake <harris.blake@ncleg.net>,
Senator Jim Davis <jim.davis@ncleg.net>,
Senator Fletcher Hartsell <fletcher.hartsell@ncleg.net>,
Senator Eric Mansfield <eric.mansfield@ncleg.net>,
Senator Martin L. Nesbitt, Jr. <martin.nesbitt@ncleg.net>,
Senator William R. Purcell <william.purcell@ncleg.net>,
Senator Tommy Tucker <tommy.tucker@ncleg.net>,
Senator Andrew C. Brock <andrew.brock@ncleg.net>,
Senator Ralph Hise <ralph.hise@ncleg.net>,
Joint Caucus Leader Marilyn Avila <marilyn.avila@ncleg.net>,
Representative Rayne Brown <rayne.brown@ncleg.net>,
Representative Tricia A. Cotham <tricia.cotham@ncleg.net>,
Representative Beverly M. Earle <beverly.earle@ncleg.net>,
Representative Shirley B. Randleman <shirley.randleman@ncleg.net>,
Representative Mitchell S. Setzer <mitchell.setzer@ncleg.net>,
Representative Tim Moffitt <tim.moffitt@ncleg.net>
CC: MaryKShort@aol.com
Sent: 6/4/2012 7:34:52 A.M. Eastern Daylight Time
Subj: Public Comments to 8M Clinical Policy - links provided
Dear Gov. Perdue, Sen. Berger, Speaker Tillis, and Members of the NCGA:
On 04072012 I sent a Public Records request to DHHS. I have no idea why there was a problem with getting it to the right person. That FOIA (Freedom Of Information Act) request was for ALL of the public comments that were submitted to DHHS/DMA for Proposed Clinical Policy 8M CAP-IDD. There were two comment periods. May 12 - June 26, 2011 (45 days) and July 28, 2011 - August 11, 2011 (15 days.)
In a phone call with Susan E. Johnson at DMA on 05082012, she told me she had compiled and sent that 8M public comment information to DHHS. (Additionally, on 05082012, I emailed her requesting the "best practice documentation" for the family as provider 40 hour policy. However, as of today, I still have NOT received the best practice documentation. I followed up with her on 05172012 and her reply on 05182012 was that she had asked DHHS to assist her.)
Brad Deen, DHHS, spoke with me at the MCAC (Medical Care Advisory Comm.) Meeting on 05182012 and told me he had sent the documents to a different Mary Short email address. I was confused by that since I had made the request in an email to begin with. I gave him the correct information and he said he would send it. When I had not received the information by 05292012, I tried email again. Two emails and a phone call later, I received the documents on 05292012. They are in Word. I have provided links to the documents rather than attaching them to this email.
https://www.sugarsync.com/pf/D6195569_4698706_718588 (Part 1: 539 pages; 439 comments; 15 day comment period.)
https://www.sugarsync.com/pf/D6195569_4698706_718581 (Part 2: 79 pages; 101 comments; 45 day comment period.)
When we were in Raleigh on 05302012 and 05312012, I had the documents on a thumb drive with me and I told as many legislators as I could about what was in the documents I had barely had a chance to read. Sen. Daniels' LA, Andy, downloaded the documents. I have sent them as email attachments to some other people, too. Additionally, I have sent them to the HHS/OCR attorney in Atlanta who has been assigned my (our) complaint because I specifically complained about 8M and that DHHS/DMA/DMH not listening to the comments.
On Friday, 06012012, I had both documents printed out. Over the weekend, 06022012-06032012, I did read every single page. There were two comments in favor of the proposed changes, both from LME/MCO's. Mothers, fathers, brothers, sisters, aunts, uncles, cousins, grandparents, or any other family relation you can imagine, all wrote to beg that DMA not change the CAP-IDD(MR/DD) waiver by eliminating Home Supports or limiting families to 40 hours a week. These are very, very compelling comments. Agencies, such as The Arc or UCP or ASNC (Autism), all wrote to oppose the elimination of Home Supports or to oppose the 40 hour limit. And yet, DMA did just that. You must be wondering, just as I am, why it is that if there are 1,091 +/- parents performing Home Supports in all of NC and 500 comments were received in opposition to the elimination of Home Supports or the 40 hour policy, then why would DMA do it? I sincerely believe it is because they are simply mean-spirited. There is no logical reason to believe otherwise.
I have spent time and effort in an attempt to convince you that there is a problem at DHHS/DMA/DMHDDSAS. I don't know what it is you need to have in your hands in order to believe me and in order to take any action to stop the further expansion of the 1915(b)(c) waivers and more specifically, the 1915(c) NC Innovations waiver. Please. The PBH pilot of the Innovations waiver INCLUDED its own HOME SUPPORTS service definition. It was just in July of 2011 that the NC Innovations waiver eliminated Home Supports and implemented a 40 hour policy. The NC Innovations waiver that is being expanded is NOT the Innovations waiver that was piloted by PBH all those years.
The fact the CMS has approved any State Plan or State Plan Amendment or Waiver is NOT proof that what DHHS/DMA/DMHDDSAS has done is legal. You all are acutely aware of the DOJ findings with regard to ACH/IMD and Personal Care Services. The fact that there is a pending lawsuit (K.C. v NCDHHS, PBH, et al.) brought against PBH after the changes to the piloted Innovations waiver is also proof of some level of disregard of the PEOPLE impacted by the Innovations waiver.
The financing of this waiver through a capitation formula which results in a month to month variable check to the LME/MCO's rather than an annual appropriation by the NCGA which always allowed for growth (moving people off of the wait list and into direct services) is flawed or a sham, or both!
The fact the MONEY has been spent by LME/MCO's on this expansion is not an argument to continue the expansion. Clearly, DHHS/DMA/DMHDDSAS has wasted millions of dollars in the past on policies or programs that have failed. Those live human beings in the IDD community are simply the least able to recover from another DHHS/DMA/DMHDDSAS "failed" policy.
Please stop the further expansion of the NC Innovations waiver. Thank you all, again.
Mary K. Short and Katie
828-632-5888 or 704-451-4144 (cell)
I have not given up in any way. Because the public comments are public documents, you can forward the links to anyone you choose.
Finally, I want to address the issue of "our" information being public. I am sorry if any of you did not want your information released, but the DMA web site is very clear that the information that is given as a public comment can, in fact, be released as a public document. I am hopeful that all of us feel it is more URGENT and IMPORTANT to speak out against these changes, than to be silenced by the threat that our information may be made public. Of course, you can always sign up for a gmail or yahoo email account rather than using your "real" email account to send "public comment" from!
Mary K. Short
828-632-5888 or 704-451-4144 (cell)
