10,000 Blog Views! and Counting...

This week, the blog reached 10,000 page views! North Carolinians (and others across the country) are watching - and inquiring minds wanna know...

At the time of the June 16th posting, the blog had reached 5,683 since February of 2012, when first launched. Since that time, the hits have more than doubled from viewers in at least 63 counties across the State of North Carolina and beyond. 

Once more, I'd like to point out that regarding total hits, the number (10,143 as of this posting) reflected to the right of the page (previously located at the bottom) is the correct total of page views since the initial launch of this parent / public information blog back in February of 2012. StatCounter was installed in May, so the data you see compiled via the blog's StatCounter statistics only reflects activity from May onward, mostly because I just haven't bothered to change it. 

Viewers include loads of parents / family members as well as provider agencies and professionals, LME / MCOs, universities and research groups, risk management groups, PR firms, law firms, advocacy organizations, and both state and federal government offices (*although due to the ambiguity of government IP data, it's impossible for a novice like me to know which specific offices nor even agencies are viewing)...

Some of the more interesting regular (and some once or twice) NC viewers include: Duke University, UNC Chapel Hill, UNC Charlotte, the Department of Veteran Affairs, the North Carolina Research and Education Network, Disability Rights NC, The Arc of NC (and various county chapters), NC Justice Center, NC Council of Community Programs, Crossroads Behavioral Healthcare (now Partners Behavioral Health Management), Daymark Recovery Services, Piedmont Behavioral Health, Sandhills Center, Saguaro Management and Accounting Services, Inc. (providing billing, human resources, program development and quality and risk management to human services companies), the Mental Health Association of Forsyth County, Raleigh's Campaign Connections PR firm, and numerous NC Government offices and agencies around the state.

And beyond North Carolina's borders: Kansas Health Institute, Virginia Commonweath University (VCU), Minnesota State Colleges and Universities, University of Georgia, Emory University, DC's American University, FHC Health Systems, Hospice of the Western Reserve in Ohio; Charleston, SC's New Hope Treatment Centers; HMS (a public government and managed-care contracting company); Deloitte, Marsh USA, and Alvarez & Marsal (each being US consulting / risk management firms with varying specialties); Nelson Mullins Riley & Scarborough LLP,  Drinker Biddle, and Hunton and Williams (each are national / multi-state law firms); and yes, even the US Centers for Medicare and Medicaid as well as a few hits from US Government offices in Washington, DC.

Yep, as election season launches into full swing (or sling as is oft the case), the world IS watching to see what North Carolina will do with it's special populations -- even if the usually less-than-enthusiastic main-stream media assignments and focus generally fall short in the real-life, human interest for "those people" and their families - because let's face it, nobody really wants to talk about what they don't understand, especially if it makes them sad... 

The 38th Vice-President of the United States, Hubert H. Humphrey, once said oh-so wisely, "The moral test of government is how it treats those who are in the dawn of life... the children; those who are in the twilight of life... the elderly; and those who are in the shadow of life...  the sick... the needy... and the disabled."

It's one of my favorite quotes and oh-so-fitting... and if you happen to be a quote-y kind of person like me and enjoy wise words, here's another for ya...

"Open your mouth for the mute, For the rights of all the unfortunate. Open your mouth, judge righteously, and defend the rights of the afflicted and needy." --Proverbs 31:8-9

So rest assured North Carolina, Inquiring Minds DO Wanna Know.

And to all the blog followers, the advocates, the exhausted parents, supportive family members; loyal and dedicated direct care staff, Case Managers, and various professionals (our personal community villages) who go above and beyond every day to make our lives possible...  and to all the people of conscious who listen, who care, who try and try again - and who never, ever give up because you know what is right and just and because it's just not in your soul's design to believe that one life is worth less than another... I'd like to take this opportunity to say Thank You!

Oh, I mentioned 63 counties; here they are... Clicking on the County links below will take you to the corresponding State representatives page on the North Carolina General Assembly's website.

1. Alamance County 
2. Beaufort County 
3. Bertie County  
4. Brunswick County 
5. Buncombe County 
6. Burke County 
7. Cabarrus County 
8. Caldwell County  
9. Catawba County 
10. Cherokee County 
11. Cleveland County 
12. Cumberland County 
13. Dare County 
14. Davidson County  
15. Duplin County 
16. Durham County  
17. Edgecombe County 
18. Forsyth County  
19. Franklin County  
20. Gaston County 
21. Granville County  
22. Guilford County  
23. Halifax County  
24. Harnett County 
25. Haywood County  
26. Henderson County  
27. Hertford County  
28. Hoke County  
29. Iredell County  
30. Jackson County  
31. Johnston County  
32. Jones County  
33. Lee County  
34. Lenoir County  
35. Lincoln County  
36. Macon County 
37. McDowell County  
38. Mecklenburg County 
39. Monroe County *voter representation falls under Union County
40. Moore County  
41. New Hanover County  
42. Onslow County  
43. Orange County 
44. Pasquotank County  
45. Pender County  
46. Pitt County  
47. Polk County  
48. Randolph County  
49. Robeson County  
50. Rockingham County  
51. Rutherford County  
52. Sampson County  
53. Stanly County  
54. Stokes County  
55. Transylvania County  
56. Union County  
57. Wake County 
58. Watauga County  
59. Wayne County 
60. Wilkes County  
61. Wilson County  
62. Union County  
63. Yancey County  

To find out who your voting representatives are, visit the NC General Assembly search page.

For more on who's involved and how to advocate, see Speak Up!

Thoughts to Share...

Hi, All!

Those of you who already know me are aware that I am more comfortable in small group settings where information is being actively discussed verbally…  so this form of communication is a stretch for me… blogging.  I have had to learn to stretch much in my life as has many of you, too…  and each stretch has its time of pain and relief.  Pain in the act of learning how to do it and relief that perhaps I will not only live through it but actually find something of value to take away to help my family and others and hopefully personally grow into that person I always wanted to be when I grow up…;)!  Therefore, with that said, I will be sharing in this venue as though I am visiting with you all in a small group to encourage dialogue so we can all learn together!  One of the HUGE advantages I find in this venue is that whatever your schedule, you can access and be part of the conversation... 

Now, talking about VERY serious topics that affect lives so directly is vital to finding real world solutions; however, I have also learned from my middle daughter, Cassie, just how VITAL humor is to life, too…  so I am taking a life stretch lesson from her and hoping you all will allow me this license to suggest we create our own version of a traditional arcade-style game to help us work through our frustrations while we learn together as well… and just maybe a better real world solution will emerge… (Okay, I admit it freely, I have often been accused of being a dreamer…  but we all know, too, what is needed is also possible…if we work together throughout the system!)

So…

Have you ever played Whack-a-Mole? You know, the arcade-style game where a mole suddenly appears and you have a soft mallet that you hit it to score points… the game increases in speed as you progress through the levels until the moles appear so frequently and randomly you cannot predict where they will appear or react fast enough when they pop up…and then soon after, the GAME OVER sign appears… and your tickets earned spit out of the meter for you to go redeem at the prize counter and it usually takes a LOT of tickets to get the item you actually want when you get to the counter?  Yeah, that is the one I am talking about…;)!!

Traditional Whack-a-Mole Arcade Game

picture source is http://www.arcadeamusements.com/products.cfm?n=products&id=154

I mention this game because at first glance we feel we are caught in this type of arcade-style life where the holes in the ground are the various funding streams, service definitions, operational functions, etc and the moles are the various items that seemingly pop up all of a sudden and are all “urgent” in some way or another requiring our immediate attention, input, advocacy.  It is so hard to keep up with what is happening in the URGENT file (the moles appearing quickly on the screen) much less to delve into understanding where it is coming from or what is causing them to pop-up in the first place (ongoing systemic issues that require deeper investigation along with committed effort and resources to address).   

Crystal with help of others has provided this site with extensive information that shows the moles on the screen in the “Urgent” file and additional in-depth sourcing information that gives a view into the tunnel to understand why.  I applaud this approach to allow ANYONE interested to participate at whatever level desired.

So, let’s play a round of Whack-a-Mole together… shall we?!  For today, I select the Medicaid funding channel and the current “Urgent” mole is the imminent change at the end of this month from CAP-MRDD plan to the CAP-IDD Plan.  This does not affect those who are currently being served through NC Innovations Waiver.  See the CAP-IDD Decision Flowchart below:

Please share your thoughts, and also let us know which “mole” should we take a whack at understanding better at our next blog time together?   (Be aware that just like the game, we often have a “mole” appear in the same place many times usually for different aspect of that topic that needs dealing with at that moment)…    

    

To all those who know that “Game Over” can truly be a life and death matter for those we love and does reflect the overall health of a community, too!    ~ Anna

NC Trainings re Innovations Waiver & Advocacy

Transition to Managed Care Advocacy Trainings

[ from Disability Rights NC ] 

Free Training Opportunity

NC Innovations Waiver: Advocating for Appropriate Services Under the Managed Care System

As our state transitions to a managed care system, Disability Rights NC is here to help you understand what this means for you and your loved ones. We are holding a series of free trainings in collaboration with Family Support Network of NC local programs. We have lots of locations and dates coming up. Tell us which one you will be attending by clicking here to register or contact your local Family Support Network coordinator at http://www.fsnnc.org/findlocal.

In this training, staff from Disability Rights NC will discuss:

• The transition to managed care
• “How-to” advocacy skills to help families protect a person’s rights during and after the transition
• How care coordination differs from case management
• Strategies on navigating Medicaid appeals and how the process changes under managed care
• General self-advocacy tips

BRING YOUR QUESTIONS AND CONCERNS!

Upcoming Trainings

Rockingham -- September 5, 2012 at 12:00 pm (noon)
Thomas H Leath Memorial Library, 412 E. Franklin St, Rockingham, NC 28379

Sanford - September 13, 2012 at 12:00 pm (noon)
Lee County Arts & Community Center, 507 Steele St, Sanford, NC 27330

Fayetteville - September 14, 2012 at 10:00 am
CDSA, 1211-A Ireland Dr, Fayetteville, NC 28304

Charlotte - September 20, 2012 at 12:00 pm (noon)
Location TBA

Hickory - September 25, 2012 at 12:00 pm (noon)
Patyrick Beaver Memorial Library, 375 Third St NE, Hickory, NC 28601

**Pittsboro - September 27, 2012 (Time TBA)
Location TBA

Lumberton - September 28, 2012 at 12:00 pm (noon)
Partnership for Children, 210 E. 2nd St, Lumberton, NC 28358

Rocky Mount - September 28, 2012 at 12:00 pm (noon)
Braswell Memorial Library, 727 N. Grace St, Rocky Mount, NC 27804

*Goldsboro - October 3, 2012 at 6:00 pm
Wayne County Public Library, 1001 E. Ash St, Goldsboro, NC 27530

Raleigh - October 4, 2012 at 7:00 pm
Good Shepherd Lutheran Church, 7000 Creedmoor Rd, Raleigh, NC 27615

Wilmington - October 11, 2012 at 12:00 pm (noon)
New Hanover County Public Library - Northeast Branch, 1241 Military Cutoff Rd, Wilmington, NC 28405

*Jacksonville - October 11, 2012 at 6:00 pm
Onslow County Public Library, 58 Doris Ave E, Jacksonville, NC 28540

Winston-Salem - October 25, 2012 at 6:00 pm
Little Creek Recreation Center, 610 Foxcroft Dr, Winston-Salem, NC 27103

Burlington - November 8, 2012 at 7:00 pm
LIFESPAN Circle School, 919 Stokes St, Burlington, NC 27215

*Goldsboro and Jacksonville events are not coordinated by local Family Support Network programs.
**Disability Rights NC is participating as a panelist in a program coordinated by FSN on Managed Care.

Next Step Meeting: Frank Convo. with Suzanne Goerger

The Next Step…

An information group for persons interested in residential options for persons with intellectual and developmental disabilities, as well as how to create a fulfilling life once launched!

“Change is Coming!”

A Frank Conversation with Suzanne Goerger

I/DD Care Coordination Manager

Alliance Behavioral Healthcare

September 15, 2012

9:30 a.m. to 11:00 a.m.

Millbrook Exchange Community Center

1905 Spring Forest Road in Raleigh

Meetings are every 3rd Saturday of the month, from 9:30 a.m. to 11 a.m., at Millbrook Exchange Community Center, 1905 Spring Forest Road (between Falls of the Neuse Road and Atlantic Avenue) in Raleigh. Meetings are free, and light refreshments will be available. No reservation necessary.

Sign in at the door. For more info, contact Kathy Honeyman at kathyhoneyman@earthlink.net.

NCGA 9/12 Meeting Notice on Housing / Blue Ribbon Commision

NORTH CAROLINA GENERAL ASSEMBLY Raleigh, North Carolina 27601

September 6, 2012

MEMORANDUM

TO: Members, Housing Subcommittee for the Blue Ribbon Commission on Transitions to Community Living FROM: Senator Ralph Hise, Co-Chair Representative Justin Burr, Co-Chair SUBJECT: Meeting Notice DAY DATE TIME ROOM Wednesday September 12, 2012 10 A.M. 415

Parking for non-legislative members of the committee/commission is available in the visitor parking deck #75 located on Salisbury Street across from the Legislative Office Building.  Parking is also available in the parking lot across Jones Street from the State Library/Archives.  You can view a map of downtown by visiting http://www.ncleg.net/graphics/downtownmap.pdf. If you are unable to attend or have any questions concerning this meeting, please contact committee assistants Dina Long at 919-733-5908 or Shelly Carver at 919-733-3460.  cc:  Committee Record  _X_        Interested Parties    _X_

NCGA JLOC-HHS Meeting Agenda 9/10

SUBCOMMITTEE ON MENTAL HEALTH

JOINT LEGISLATIVE OVERSIGHT COMMITTEE ON HEALTH AND HUMAN SERVICES

AGENDA

September 10, 2012, 1:00 P.M.,

Room 643, Legislative Office Building

Representative Justin Burr, Co-Chair

Senator Louis Pate, Co-Chair

Introductions and Comments 1:00-1:10
Chairman Burr
Chairman Pate

Review of Law Establishing Subcommittee Charge 1:10-1:15
FRD Staff

Overview of Major Mental Health Reform 1:15-2:00

• Major Legislative and Policy Changes 2001 – Present
  Research Staff

(Presentation will address major changes in the State’s delivery of mental health services, including information on Olmstead/ADA – description, impact on the state’s mental health system)

• Impact on State Facilities’ and Community Psychiatric Hospitals 2:00 – 2:45
  Ms. Laura White, Team Leader Psychiatric Hospitals
  Division of State Operated Healthcare Facilities

(Presentation will address number of people released into the community as a result of reforms/policy changes, adequacy of beds and services; changes in availability of state facility and community mental health beds over this period; state facility and community mental health bed capacity; state facility catchment areas)

• LME Perspective on Impact of Major Reform/Policy Changes 2:45 – 3:30
  Pam Shipman, CEO PBH

Impact of Mental Health Policy on Law Enforcement 3:15 – 3:30
Eddie Caldwell, Executive Director, NC Sherriff’s Association

Committee Discussion/Comments 3:30-4:00

Adjourn

Parent Correspondence re CAP MRDD transition

Fwd: Waiver Update: CAP-MR/DD to IDD

---

MaryKShort@aol.com <MaryKShort@aol.com>	Tue, Sep 4, 2012 at 7:37 PM
To: MaryKShort@aol.com
This is about the CAP-MR/DD to IDD transition ... not NC Innovations or MCO's!  It looks like the change to the IDD waiver (and the 40 hour rule) will happen on Sept. 28th for those of you still on the CAP waiver.  Remember:  You have a right to request a reasonable accommodation or an exception to the 40 hour policy under the ADA (American with Disabilities Act.)  You simply request the ADA exception with the reason WHY you need the exception.  You also have a right to request an ADA reasonable accommodation or an exception to the SNAP/SIS score guideline/limit on the amount of services that are "medically necessary for health and safety."  Katie SNAP's at a Level 3 and received Level 5 Home Supports, exception was granted for her medically necessary for health and safety level of services.  You can request an ADA accommodation to any rule, policy, procedure or whatever.  Only you know what it is that will truly meet the "medically necessary for health and safety" level of services.   For those of you who switched to the IDD services way back when (November?) and who have been working more than 40 hours BECAUSE the state was not enforcing the limit because the waiver was not CMS approved ... It is my guess that you will now be required to come into compliance or request the ADA accommodation.   Mary K. Short 828-632-5888 or 704-451-4144 (cell) From: Connie.Martin@cms.hhs.gov To: MaryKShort@aol.com Sent: 9/4/2012 10:43:26 A.M. Eastern Daylight Time Subj: RE: Waiver Update: CAP-MR/DD to IDD Good morning, Ms. Short, Ms. Johnson left DMA a couple of months ago to take another position in the community according to the outgoing voice mail on her old telephone number.  At the end of June, CMS granted the NC DMA another extension to run until September 27th, 2012, so there have been no gaps in coverage.   CMS has recommended approval of the waiver renewal and it is going through the sign off process now.  Thank you, Connie  From: MaryKShort@aol.com [mailto:MaryKShort@aol.com] Sent: Sunday, September 02, 2012 7:26 PM To: Martin, Connie L. (CMS/SC) Subject: Waiver Update: CAP-MR/DD to IDD Hello Connie.  I wrote to NC DMA (Susan Johnson, below) asking about the CAP-IDD waiver and have not heard back.  A number of families have asked me I knew for SURE that the CAP-MR/DD to CAP-IDD waiver had been approved by CMS or if there was an extension.  In fact, DMA's web site only officially lists the extension to the end of June!  That would imply there is no CAP-MR/DD or IDD waiver.  Please let me know where it stands.  Thank you. Mary K. Short 828-632-5888 or 704-451-4144 (cell) From: MaryKShort@aol.com To: susan.e.johnson@dhhs.nc.gov Sent: 8/30/2012 1:47:23 P.M. Eastern Daylight Time Subj: CAP-MR/DD to IDD Is the MR/DD going to IDD on October 1st or not?  I can't find anything in a Medicaid bulletin or Update ... I only see IU #92 that said until 6/29/12.  What's up? Mary K. Short 828-632-5888 or 704-451-4144 (cell)

Home Modifications, seriously?

Interesting little details regarding special Medicaid benefits for disabled recipients I recently discovered... Thought I'd share.

Although my daughter is chronologically 14, she functions socially emotionally at the level of a toddler - except, being 5'1," she is tall enough and strong enough (even at 61 pounds) to get into things I would never have imagined, which includes pretty much everything.

A few examples of her antics:

• shredding a hundred dollars worth of books in a single setting once she's broken into her brother's room
• clogging the toilet with rolls of toilet paper, clothing, hand towels, baby wipes, hand lotion, latex gloves, and anything else within reach
• chewing through packaging of grocery items such as bread loaves, chips, cookies, and anything else that doesn't come in a can
• eating a half bag of puppy treats
• breaking out of the house and wandering off down the street
• grabbing a waiter's toucas in a restaurant
• grabbing food off of stranger's plates in route to a table when dining out
• slapping innocent passersby in a store while shopping
• shredding mail, magazines and any paper money that might have been left within reach
• ripping shelves, pictures, wallhangings and other decor down from the walls of her room
• breaking into the master bath and filling both sinks with water and every nearby object to include: toothbrushes, toothpaste, floss picks, perfume, lotion, hair gel, baby oil, make up, jewelry, applicators, tampons, face cream, mouthwash, etc (and yes, anything with a lid has been opened first... I call this move, "the madd scientist")

We had taken down the baby gates once our youngest was about 3 and despite the inability to sit down for more than 76 seconds at a time (or pee with the door closed for that matter), we were exceedingly reluctant to resort to imprisoning ourselves once more in our own home... until the morning I stepped from the pantry around the corner to catch my daughter stealing a slice of frying turkey bacon right out of the pan where it was cooking (she is quick!). --That very day, we accepted our defeat and went out and purchased $150.00 worth of child barriers, again. (I like to joke that we live in a gated community.)

Mind you, Isabel is a child who never crawled (she just stood up one day when she was five and took her first steps) and barely lifts her feet when she walks, but it took her no time at all to learn that she was tall enough to lift her long skinny leg and step right over the gate... so we had to raise it about 5 inches off the floor and bolt it into the walls and stair railings - though that didn't detour her from trying. And still doesn't... I catch her sometimes fingering the catch on the gates and can almost see those little gears turning trying to figure it out; it will not be long.

Meanwhile, we have knob covers on all the other doors in the house (you know the ones) and while, she's yet to master turning the knob with them on, she has discovered that breaking them off the knobs is just as effective for gaining entry into someone else's bedroom (or bathroom).

What to do?

Well, I decided to find out about the whole Home Modification deal to see what we would need to do to have a couple of Dutch (half) doors installed and custom door locks because like most folks in this economy, desperately needed home improvements are just not within our means...

Here's what I discovered:

Sure, DD recipients and their families do qualify for "Home Modifications" - an allotment of up to $15,000.00 per every 3 years (until the new statewide Waiver takes effect in our catchment area and then it's every 5 years). 

There is no agency per se for helping determine possible solutions and / or cost-effective strategies for best keeping your child safe. Apparently, you come up with your own ideas and then go off and find 3 different contractors to provide 3 quotes / estimates for the prospective job(s) to submit for approval along with a justification. Of course, like all government contractors, the lowest bid wins.

Here's the kicker... The lowest-bidding, winning contractor (in today's economy) must be willing to do the work on good faith with the promise of getting paid for their materials and labor later by Medicaid. Hahahahaa, yeah right. --If anyone has a number for such a person, please let me know!

Of course, one could always opt to pay the contractor secretly upfront (which is illegal per Medicaid policy) and then hope you can trust them to reimburse you when they eventually receive their payment from your child's Medicaid budget. If it turns out that your contractor is less than ethical, what are you going to do about it? After all, you committed Medicaid fraud by paying out of pocket for the work and materials to begin with...

Things that make ya go Hmmm...

Parent Guest Contributor: Anna Cunningham

There's a lot going in North Carolina regarding the statewide 1915(b)(c) Medicaid Waiver and CAP I/DD / mental health reform / overhaul... more than any one person (be it parent or professional, or I dare say, legislative member) can keep up with. 

As a short-staffed working mother of a DD teenager and new "typically developing" kindergartener, I often find it difficult to keep up with posting even the basic important stuff between "regular life" and "special life"...

I mean, as working parents of school-age children, we all know what it's like running the rat-race juggling our routine responsibilities, meet deadlines, pay bills, grocery shop, squeeze in the occasional doctor or hair appointment, and lug our kids around to various activities, play dates and so on... I do all that too.

But to put things in perspective for those working parents fortunate enough not to have to deal with the struggles and challenges of caring for and protecting a child (or adult) with Intellectual Disabilities, here's a breakdown of my extra "special" obligations so far for this calendar year:

• 1 three-day hospitalization,
• 22 (usually day-long)  medical appointments with doctors and specialists (to include: dental, endocrinology, behavioral, neurology, gastroenterology, ophthalmology, orthopedics, medical rehabilitation, and physical therapy),
• 2 (2+ hour) IEP's (last calendar year there were 5 or 6),
• 3 CAP-related meetings (not including countless phone calls), and
• 5 other special DD involved events, meetings, and happenings.

Those are just the appointments and meetings specially relating to the specialized care, well-being and education of my daughter and does not include sick days, Miracle League baseball games, legislative assemblies, meetings with Senators and Representatives, DWAC meetings, other advocacy meetings and rallys, nor does it include any of what most of us would consider "routine" responsibilities as a grown-up and a parent, such as extra-curricular activities and appointments for my "typical" child, nor for myself (as if I had time for me)...

Which is why I've frequently been asked, "When do you sleep?!" Well, I don't, much.

That's just how we special parents roll. 

But because the future of our children and their peers during this transition period is so vitally important and there's a great deal of important information to get out, explain, break down, dispel, and share with others, I've invited fellow Special Mother and Advocate, Anna Cunningham, to join in the blogging fun.

It's not uncommon when I'm out banging cans and preaching my cause to be asked if I know Anna or for someone wanting to connect us... I mentioned that to Anna when we spoke regarding sharing the voice of the World Wide Web; she laughed and said the same thing happens to her about me. ;-)

More about Anna...