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.

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.

From The Arc of NC

Despite overwhelming support from families and people with disabilities across North Carolina, it appears the NC General Assembly will not act on The Arc’s proposal to restore balance in our state’s Managed Care Organizations. Without action, individuals with intellectual/developmental disabilities (I/DD) and their families will no longer have someone other than the Managed Care Organization write their person centered plan (plan of care), unless the MCO chooses to allow that option. Currently, no MCO in the state plans on offering this option. This means that plans of care for people with I/DD will continue to be developed by the same organization that determines how much funding an individual will receive.

Though our proposal faced long odds in the legislative short session, many legislators expressed support for the proposal. Unfortunately, erroneous information on the costs of our proposal given to legislators by certain MCOs, combined with the efforts of powerful lobbyists employed by some MCOs, proved too difficult to overcome. While there is still time for the legislature to act, it is unlikely any action will take place before their adjournment this week.

The lack of action will result in an additional ten thousand people with I/DD losing Case Management Services by January 2013, without the benefit of an independent broker working for them and not the MCO. Additionally, hundreds of private sector jobs will be lost while MCOs expand their workforce.

The legislature's lack of action is particularly disappointing since The Arc attempted to make our proposal fit what legislative leaders suggested. Though we believe a more robust private Case Management system makes sense for people with I/DD, we adjusted our proposal to the more limited two functions of Care Coordination. Legislative leadership needed a state budget neutral proposal, and our proposal would not increase the state budget. Our efforts were a sincere attempt to modify a model that is not a good fit for people with I/DD before the model was implemented statewide. The fact that legislators were unwilling to address these issues is very disconcerting.

While terribly disappointed in the outcome, we are pleased that so many spoke out for what is right for people with intellectual and developmental disabilities. Over 1100 North Carolinians from all parts of NC signed the petition to support this proposal with over 200 heartfelt comments about their situation. Hundreds of families called their elected representatives and participated in legislative meetings, making elected officials aware of the serious concerns they have about the future of our system.

The Arc encourages MCOs to listen to people with I/DD and their families in the coming months and contract with independent care coordinators to write plans and link to services, as is allowed under current law. Such a model, designed appropriately, will provide much needed support and be cost effective.

Regardless of the ultimate outcome of this legislative session, The Arc will continue its efforts to modify the State’s plan for Managed Care for people with I/DD. We believe legislators and administration officials, when properly informed, will see the flaws in the design of the current system for what they are and make appropriate changes.

We encourage families and consumers to continue to voice your concerns to legislators and the administration through all available channels. The Arc will begin publishing information on how best to influence the managed care Waiver implementation beginning in early July.

For now we want to thank all of you for your incredible advocacy this year! While not having our proposal adopted is disappointing, your actions significantly altered the debate around HB 916 in the legislature. Your voice will be needed more than ever as this transition moves forward.

Medicaid Reforms May Leave Developmentally Disabled in the Cold

Note: highlights, links, italicized quotes as well as comments in *purple are entirely my own mark-up and not reflective of the author nor original posting, link below. 


--For more information in a detailed outline with supporting documents regarding critical issues facing NC's DD populations and families, CLICK HERE. 


This is why we MUST PAUSE!

Medicaid Reforms May Leave Developmentally Disabled in the Cold

Unintended consequence of 2011 law to improve treatment of mentally ill

By Barry Smith
Jun. 11th, 2012

[ Original article from Carolina Journal Online ]

RALEIGH — Developmentally disabled North Carolinians could slip through the cracks as mental health services across the state transition into a new health care delivery system.

Advocates for developmentally disabled patients fear that thousands of patients might lose case management services as local and regional mental health organizations (often called local management entities, or LMEs) begin implementing a managed care system of health care delivery. Time is running out for lawmakers to make the statutory changes if they want to fix the problem before the transition is complete the first of the year.

People with developmental disabilities include people with autism, cerebral palsy, Spina bifida, Down’s syndrome, and intellectual disabilities.

A law that passed last year changes the delivery of patient care to Medicaid recipients of mental health, developmental disability, and substance abuse services. The effort seeks to expand a service-delivery model employed by Piedmont Behavioral Health Services, headquartered in Cabarrus County, statewide.

Lawmakers hope the change, when complete, will result in increased efficiencies for the Medicaid-related services.

The primary emphasis of the new law was to improve services for the mentally ill. But in what may have been an unintended consequence of the legislature’s actions, advocates for the developmentally disabled worry that the patients and families they serve may have been overlooked.

Julia Adams, assistant director of government relations for The Arc of North Carolina, said that case management is key to making sure developmentally disabled patients and their families get the health care and support services that they need.

Case managers are “experts in understanding the needs of this specific community and how to best help this community,” Adams said, noting that a lot of people with developmental disabilities often have difficulty figuring out the complexities of their care on their own.

Adams said that approximately 6,000 such patients could slip through the cracks.

While a handful of area mental health organizations already have made the move to the new managed care model, most have not. However, state law requires all of them to shift to the new model by Jan. 1, 2013.

*Whoa Nelly! WE ARE NOT READY.

Patients and family members already are reporting problems they’ve encountered from the changeover in some parts of the state.

Jane Lindsey, whose 21-year-old child suffers from a number of disorders, has encountered problems getting a psychiatrist for her child.

Lindsey’s family took guardianship of their child when she was 4 months old.
“She was a shaken baby,” Lindsey said. The adult child sees about 12 different specialists. “She has three immune disorders,” Lindsey said. “At times, she can have a list of 40-plus medications.”

Lindsey, who lives in Hendersonville, said that on Feb. 14, when her child was headed home from a doctor visit, she experienced a panic attack. Despite having numerous meetings with and calls to area officials, Lindsey has been unable to get a psychiatrist to see her child for clinical intervention.


Procedures stipulate that the managed care entity must authorize such services before they are delivered.

“According to her neurologist, if she continues to have these panic attacks, she will die,” Lindsey said.

Targeted management had been provided by for-profit and nonprofit private organizations. Those businesses will close down, Adams said. She said 150 people within the Arc of North Carolina will no longer work for the private sector.

*Small agency owners and providers - some of the best, most honorable, passionate professionals in the field - are being set up for failure! 

Jim Jarrard, deputy director of the state Division of Mental Health, Developmental Disabilities, and Substance Abuse Services, said that responsibilities of former case management workers will be divided among care coordinators and community guides.


*Care Coordinators will be accessible via central call center (unless there has been a recent change?) while the minimum qualifications for Community Guides include: 18 years of age, high school diploma, and valid NCDL.

While the new coordinators and guides won’t be as “robust” as the former case managers, Jarrard said that “they certainly help you navigate the system.”

Jarrard said he understands the concerns that have been raised about case management. “We’re trying as hard as we can to try to allay fears,” Jarrard said. “I think change is always hard for people.”

*Mr. Jarrad: We are NOT afraid of change; our lives ARE change... this is not our first rodeo. --We are afraid of losing wonderful staff who are payed nothing for the jobs they do; of losing the invaluable support of case managers we've built trusting relationships with; of having to quit our jobs to fill in gaps that shouldn't be there; of not being able to care for the children we love AND survive; of having to surrender our children to salvage the rest of our family members... 


And we're afraid no one is listening  - and too little too late is just too much to risk our lives for.

Adams counters that fear of change isn’t the problem. “People are actually getting into crisis because the system is not functioning,” Adams said.

Adams said she is working with lawmakers in an effort to make sure developmentally disabled patients get the treatment plans and service referrals they need.

Two legislators — Sen. Ralph Hise, R-Mitchell, and Tom Murry, R-Wake — said they are working on legislation to resolve the problem.

“We know what we want to do,” Murry said. “We’re just trying to see if we can get it done in the time remaining.”

“We’re in the drafting process,” Hise said. But he noted that Senate committees are shutting down and legislative leaders have set a June 19 target date for adjournment.

Adams said the changes need to be made this session, and if legislators believe it’s a priority, it can be accomplished.

“I think they need a green light from the leadership,” Adams said.

If they wait until the 2013 session, which would start in late January, case management services would have already ceased, she said.


*Why are we in such a hurry to race this through haphazardly? Shouldn't we want to make absolutely, positively certain that this is done RIGHT? That no one falls through the cracks? That no one ends up with egg on their face and the State is not opening itself up to more federal lawsuits and yet another DOJ investigation? 


“By the time the fix comes, there may be nobody left to work with these people,” Adams said.

*What if this were your child? Would you leave these issues hanging 'til next session?

Barry Smith is an associate editor of Carolina Journal.

Parent Legislative Correpondence

Colleen is the parent a 12-year-old son and CAP recipient with multiple diagnosis and special needs including an auto immune disease and Traumatic Brain Injury (TBI) attributing to many medical, developmental and behavioral issues. She also has another child with needs who is not being served. Posted with parent permission.


Colleen is in NC House District 36, Senate District 17 and will fall under Alliance Behavioral Health Care LME (formerly the Durham Center) upon implementation.

Legislative Correspondence

from another Parent Perspective

From: COLLEEN

Date: May 22, 2012 4:03:40 PM EDT

To: "Rep. Nelson Dollar" <nelson.dollar@ncleg.net>

Cc:  [omitted]

Subject: Thank You

Representative Dollar:

Today I visited your office with my old Case Manager, my QP, my current CAP worker of 2 years and we discussed the current Waiver 916 that is slated to go into effect in January. I appreciate the secretary listening very intently to our concerns, which are the collective concerns of this population and their families. 

I understand the need for fiscal responsibility and we care deeply about the direction our government has taken on spending, considering that my husband is one of the few 49% of taxpayers in America today. However, we both also deeply feel this is the wrong way to achieve fiscal responsibility, on the backs of some of our most voiceless, innocent and already struggling children and their families. This current Waiver proposal needs much deeper investigation by Legislative Members such as yourself, as there are very obvious problems and conflicts of interest with this current proposal. I urge you to restore INDEPENDENT CASE MANAGEMENT for the DD community. I also urge you to CREATE CHECKS AND BALANCES outside the MCO that compel them to be accountable to provide services as needed and to allow for a 3rd party binding conflict resolution entity. 

Thank you again for your time. I will be watching closely to see what various legislators do with this urgent need.

Blessings,

Colleen

Wake Forums: CAP Services

In text...

Community Forums (from Alliance Behavioral Healthcare): Services for People with Intellectual / Developmental Disabilities with the Merger and 1915 b/c Waivers 

To be held:

Wake County Commons Building
4011 Carya Drive
Raleigh, North Carolina 27610

Wednesday, May 9, 2012
Focusing on those with CAP MR/DD services

12:00-1:30 pm or
5:30 - 7:00 pm

Monday, May 21, 2012
Focusing on those waiting for services, or those receiving Medicaid TCM or State-funded services

12:00-1:30 pm or
5:30 - 7:00 pm

Alliance Behavioral Healthcare is a new multi-county Area Authority merging The Durham Center and Wake LME. For more information on the merger or these forms, visit www.durhamcenter.org. 

email from Dr. Pat Porter

09 April 2012

Received via email from Dr. Pat Porter, DHHS consultant to the NC General Assembly:

Hello Crystal, I followed up on your question regarding the rates of pay for direct care workers per the changes in approved service definitions.  While this seems to be resolved for now, there were a couple of issues that caused some confusion with the transition of ECBH to the B-C Innovations Waiver.

The CAP IDD waiver is not a perfect crosswalk to the Innovations waiver.  In the CAP Waiver, recipients have had access to Home and Community Support (HCS), which is primarily a habilitative  service with a very small amount of personal care (PCS) blended in.  (CAP IDD also has the basic PCS).  So, HCS in CAP cross-walks to In-home Skill Building and PCS in the Innovations waiver.   In-Home Skill Building (a hab service) pays more than PCS.

As ECBH was cross-walking the services during transition, they cross-walked much of the HCS to PCS, rather than In-Home Skill Bldg.   Again, HCS/In-Home Skill Bldg. pays a higher rate than PCS.  But, there was a reason for this. ECBH could find very few habilitation  goals on the plans being reviewed and, unfortunately,  they found little or no evidence of assessments supporting the recipient's ability to benefit from habilitation.  Based on the assessment information they found, it appeared that most recipients were actually receiving more PCS than hab. As you know, the Managed Care sites  must pay for the actual services needed and rendered.

With further review and technical assistance from the Division of Medical Assistance,  ECBH elected that the wisest course of action on behalf of their consumers would be to cross-walk HCS directly to In-Home Skill Bldg for ease of transition.  I am told that these cross-walked plans will last for the remainder of the plan year.  This is the action that had already been taken by Western Highlands and PBH as they made these transitions.  I am told that ECBH alerted the providers in a March 22 Communication and in a town-hall meeting in Greenville but, apparently, not everyone has gotten the word yet.

At some point soon, ECBH will be compelled to address the  habilitation/PCS issue. Perhaps this will occur in Annual Revisions. Care Coordinators have been alerted to pay attention to additional assessments that may be needed to support habilitation goals.  Be assured that the Care Coordinators will develop plans based on what the recipient needs and wants ( that’s the rule). Utilization Management may, however, deny a habilitation service if there is not demonstrated medical necessity per CMS rules.  Certainly, if that should occur, ECBH will offer review and appeal rights. The DHHS will be monitoring the process to assure due process.

This is a long reply but I hope it is helpful to you