Showing posts with label 1915b/c. Show all posts
Showing posts with label 1915b/c. Show all posts

14 June 2012

Medicaid Reforms May Leave Developmentally Disabled in the Cold

Notehighlights, 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.

07 June 2012

Legislative Correspondence to Sen. Tommy Tucker

Wed, May 30, 2012 at 4:48 PM

From: Crystal J. De la Cruz

To: Tommy.Tucker@ncleg.net
Re: DMA 2011 Public Comment Documents on CAP I/DD


My sincere apologies for the delay in following up after our May 15th visit. I'm sure you can appreciate the sentiment when I say I've been "running around like a chicken with my head cut off."

I greatly appreciate your time and attention in meeting with [name stricken] and I regarding Medicaid Waiver concerns for the DD populations, their families and the wonderful providers who have kept us all afloat throughout this rocky journey. I recognize that this is not an easy time for NC and I do not envy your job as a Senator, so it means a great deal that you are open to having a dialogue. I sincerely believe that you want to see this baby put to bed and sleeping safely and soundly, so to speak, and I do admire your unwillingness to compromise your character... and that is why I sought to meet with you.

No, it's not an easy life raising a child with profound special needs - in fact, unimaginable to most, but I can tell you one thing with the utmost certainty: at the end of the day, it's our special folks who keep it real and truly put life in perspective. That is why I do what I do because I am the mother Isabel needs me to be. I firmly believe special people were not born to be tested, rather to serve as litmus to the rest of us. 

And that's why I maintain that there's so much more to these issues than fiscal accountability; besides Merriam-Webster defines accountability as: "the quality or state of being accountable; especially : an obligation or willingness to accept responsibility or to account for one's actions" Who among us are least accountable, least responsible for this mess than our special populations? 

Several members have expressed that they haven't heard from many parents. I keep pointing out that it is not an easy feat for many of these folks to pack up their kids with all their meds, supplies, sensory items, and equipment and travel hours away for a 30 minute - an hour meeting and well, most don't have the time nor vacation time because they use it all going to appointments with doctors and specialists. --Most of us do the very best we can with what we got and sometimes there's no extra left over. And sometimes when we do let the laundry or dishes go or forgo a shower to take the time to sit down and write a letter, send an email - pleading for help, it falls on deaf ears. 

Families need a little more acknowledgment than a pat on the head. Some of us are quite knowledgable, some are professionals in the field, some of us have really great ideas and we've been navigating system after system after new-and-improved system - but we are each experts in what we know. We need and deserve the respect of being heard by our Governor, the General Assembly and the administrators of entities entrusted to assure order and means in the survival of those they serve.

I am polishing up additional materials for you that I hope to send later today regarding our prior visit and conversation, though meanwhile I wanted to share with you the attached documents forwarded to me by fellow parent Mary K. Short who finally received them yesterday from Brad Dean at the DHHS Office of Public Affairs. Attached are the Public Comment response records from 2011 regarding the 8M CAP I/DD Clinical Policy proposals posted from 5/12 thru 6/26 and from 7/28 thru 8/11 -- a total of 540 comments; 618 pages. Pretty interesting reading. And this is what's missing - the human element.

Comments were made from across North Carolina by many parents and caregivers sharing heartfelt details of their lives as well as professionals, providers, and advocates in the DD field who know well the devastating impact such changes and service cuts would have not only on the recipients and families they serve and care for, but on their small businesses, their livelihood and the lives of staff they employ as well.

My sincerest hope that our elected officials - our Governor and members of the North Carolina Senate and House of Representatives - aspiring candidates, policy-makers, Health and Human Services administrators, LME's, MCO's, and other stakeholders and powers that be take the time now to hear that voice as our lives are in your hands... not merely the quality of our lives but rather our ability to live.

I know I'm asking a lot of you to sit down and skim through a 'book' like this but I also believe you want to assure this thing is done right; currently it's not. There's far more at stake than our State's broken-back budget - A budget crisis which cannot be rectified by plugging the dike with our finger and hoping for the best. Hoping there's not another crack - if we cement this model as it, the levee will break.

Thank you again for your time and attention and thank you in in advance for your considerations and efforts toward improving our State and our lives.

Sincere regards,

-- 
Crystal J. De la Cruz - Hopper
Mother, Advocate & Concerned Citizen

When we allow the value of human life to be determined by capital gain, when we sacrifice the well-being of the most innocent among us to compensate our own shortcomings, and when we judge the worth of our most fragile, not by their character nor intention, but rather their abilities – We Are in Crisis.

http://no2nchb916.blogspot.com/

"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." 
--Hubert H. Humphrey

2 attachments
20110512-0626 NC-DHHS-DMA Public Comments 8M CAPIDD.doc [598K]
20110728-0811 NC-DHHS-DMA Public Comments 8M CAPIDD.doc [2786K]