Parent Legislative Correspondence

Mary K. Short is a strong advocate and the parent caregiver of an adult DD recipient with profound needs.


Mary and her daughter live in NC House District 88 and Senate District 42. Her daughter is being served by Smoky Mountain LME.

Legislative Correspondence 

from another Parent Perspective

Mon, May 21, 2012 at 1:49 PM
From: MaryKShort@aol.com
To: 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 D. 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 N. McLawhorn <marian.mclawhorn@ncleg.net>, 
Representative Tom Murry <tom.murry@ncleg.net>, 
Representative Fred F. Steen, II <fred.steen@ncleg.net>, 
Senator Austin M. 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 L. Hartsell, Jr. <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 Ann 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>, 
House Speaker Thom Tillis <Thom.Tilllis@ncleg.net>

Dear Speaker Tillis and Members of NCGA:

I have sent emails to DMA requesting the best practice documentation that was used to support the 40 hour Policy limit on parent/family that is in the NC Innovations Waiver, the CAP-IDD Waiver, and Clinical Policy 8M. At that same time, I requested the best practice documentation that was used to support the Home Supports (HS) service definition from the 2008 CAP-MR/DD Comprehensive Waiver. I have not received a response.

Here is what the State Strategic Plan for MHDDSAS 2010-2013, dated July 1, 2010, page 12 of 46 says:

"Evidence based practices are those that have been shown to be effective in multiple, scientifically conducted research studies, while best practices are accepted clinical practices that demonstrate success for the individuals served."

I have asked for that documentation because they are in direct conflict with one another.

In 2008, DMA said parents may only work a daily service, no limit on the number of days.

(Home Supports has a "direct contact hours" component attached. Using DMA guidelines for HS Level 2, 6.5 hours a day maximum, would require a parent to work 45.5 hours a week maximum for the past 3+ years AND the highest level, HS Level 5, 12.5 hours a day minimum, would require the parent to work 87.5 hours a week minimum.)

Then in 2011-12, DMA said we cannot work over 40 hours a week. This is only parents or family members who live with an individual, not any unrelated staff who comes into the home or any AFL or other Group Home worker. I did not ask for the best practice documentation that DMA has used to consistently support unrelated workers working more than 40 hours a week.

As I have been waiting for a response from DMA, I did find this information posted below to PBH's web site: "To date, there are no national practice guidelines for the I/DD population." (Link provided below.)

If that statement was true when published on PBH's web site on 09292011, then what are families to believe about any DMA best practices placed into any waiver, rule, policy, or procedure? If DMA suspects some sort of rampant abuse by parents (or other living with family member) performing services, then why haven't their internal monitoring controls exposed those abuses?

I am asking that you all intervene on behalf of the 1,091 (+/-) parents (or other living with family members) who have been providing Home Supports for the past 3+ years and STOP the implementation of the 40 hour policy once and for all. I am asking you to believe me when I tell you that NO family who has participated as a formal stakeholder has said to me at any time that they SUPPORT the 40 hour limit on parents/family members. In fact, I am consistently told by formal stakeholder family members or individuals, that they SUPPORT CHOICE by the individual and/or guardian.

Finally, I want you to consider the following two NC Innovations service plans:

(Home Supports changes to: PC = Personal Care / I-HSB = In-Home Skill Building)

After accounting for unpaid supports, if he/she needs less than 40 hours of PC/I-HSB, then he/she gets to choose to use his/her parent to perform all PC/I-HSB services.

After accounting for unpaid supports, if he/she needs more than 40 hours of PC/I-HSR, then he/she CANNOT choose to use his/her parent to perform all PC/I-HSB services or any number of hours over 40 hours.

Why is it that the individual with the least ability to adjust to change is forced to change?

Mary K. Short
828-632-5888 or 704-451-4144 (cell)

http://www.pbhcare.org/guidelinearticles.asp **(Reviewed/Updated 03/26/2012)**

http://www.pbhcare.org/pubdocs/upload/documents/intro%20to%20IDD.pdf (09292011)

Introduction to I/DD (Intellectual/Developmental Disabilities)
Practice Guidelines

To date, there are no national practice guidelines for the I/DD population. In response to this situation, PBH initiated the development of an I/DD workgroup to draft guidelines. The I/DD work group includes stakeholders such as clinicians, providers, and family members who worked on a variety of projects related to the development of Practice Guidelines for I/DD Population. While the Practice Guidelines developed by the I/DD Workgroup are not exhaustive, the intention is that the guidelines will give providers and families useful information that can facilitate the process of learning more about I/DD.

http://www.pbhcare.org/pubdocs/upload/documents/Best%20Practice%20Guidelines%2011%2006%2006.pdf (10202011)

Practice Guidelines In
Working with Individuals Who
Have Developmental Disabilities

Tassé, M.J., Havercamp, S.M., & Thompson, C. (2006). Practice Guidelines in Working with Individuals who have Developmental Disabilities. Concord, NC: PBH.

From page 107:

PBH is concerned about the impermanence of funding sources and services for individuals with developmental disabilities. We are committed to empowering consumers and their families by giving you the information, skills, and resources you need to identify and obtain the best available supports. In this way, we help you become less reliant on the service delivery system to achieve your goals.

*As special parents, our perspectives, interests, and priorities in various issues surrounding NC's new 1915(b)(c) Innovations Waivers and the changes they bring to our families differ according to the unique needs of each of our children. 


If you have something to share, email: no2nchb916@gmail.com