Showing posts with label Medicaid recipients. Show all posts
Showing posts with label Medicaid recipients. Show all posts

09 September 2012

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

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

04 September 2012

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...

24 August 2012

Re Appeals & Due Process from DRNC

Because I do make every effort to assure the information I disseminate for families and other interested parties / agencies is factually acurate, I followed up with the good folks over at DRNC regarding the preceding post, Appeals & Due Process (or Lack There Of), so see if there had been any changes since my last missive was sent and posted which included due process concerns...

Below is the response I received:

-----------

From: Jennifer Bills
Sent: Friday, August 24, 2012 11:37 AM

The post is not inaccurate, especially if you read to the end about the status of Final Agency decision-making; however, Elizabeth and I consulted and feel that the tone is far too pessimistic.

Our response post would be:

Document, Document, Document

Medicaid recipients have a decent track record, both when they are represented by counsel but also pro se, of prevailing in Medicaid appeals. The key is to obtain and provide adequate documentation of the medical necessity of the service, and specific details regarding the amount of hours the individual needs. Understanding the criteria used to evaluate requests for services is particularly important. Decisions can only be based on sufficient evidence of the precise amount and type of Medicaid service that is medically necessary for the individual. Appeals should focus on the individual’s medical and social needs, as opposed to the family’s needs, even when families are providing the care. Although hardships to a recipient’s natural supports may provide context for an appeal, that alone may not meet the criteria in the service definition. Letters from clinicians, social workers, direct care staff, case managers or community guides, and families are essential to justify services. Additionally, documentation from medical providers, or a log of behaviors created by the family or direct care staff, may be more persuasive than testimony based on recollection or memory.

Even at the Reconsideration stage, if you provide additional information supporting the request, there is a chance of getting a different decision. Although OAH is not yet making the final decisions, the State legislature directed DHHS to submit a request to CMS to grant OAH this authority, and that process is ongoing. Many cases settle during the appeals process, and cases rarely go all the way to Superior Court. OAH rules allow mediators and judges to assist pro se clients with navigating the appeals process. Although they are neutral and not advocates, they help ensure the process is fair. Our message would be: don’t give up on due process. Rather, utilize it and win!

And it would be great if she could add a link to our MCO Medicaid Appeals fact sheet, attached here.

Jennifer Bills, Senior Attorney
Disability Rights North Carolina
Champions for Equality and Justice

Disability Rights NC is the state's protection and advocacy system. DRNC is a 501 (c)(3) organization. If you are a state government employee, you can support Disability Rights North Carolina through the State Employees Combined Campaign (SECC). Please use code # 1544. Donations support our efforts to promote a clear and independent voice for North Carolinians with disabilities.

Appeals & Due Process (or Lack There Of)

I try very hard not to post a great deal of personal commentary. Though today I just couldn't help myself...

The North Carolina Department of Health and Human Services reached a settlement agreement with the US Department of Justice yesterday (8/23) regarding the State's ADA and Olmstead violations surrounding the improper placement and warehousing of mentally ill and developmentally disabled adults in adult care / nursing homes across the state. [ read more... ]

It is a victory. --However big or small it may seem is moot; it is nonetheless a victory in the recognition of a tremendous need and an acknowledgement of individuals deserving of a quality life and community interaction. Definitely a step in the right direction and I commend everyone involved for their diligence and efforts toward a just resolution.

Not to rain on the parade, but...

What continues to be of concern however, is that while we scurry to "deinstitutionalize" one vulnerable population and invest in services and programs to assure these individuals are properly supported in community environments as they are entitled, we are failing to bolster all the many thousands of other special populations who are already living in integrated settings, be it at home with their families or in supported living, etc. -- the ones who are not institutionalized and don't want to be -- whose loved ones desperately want to keep them in their homes... And yet, it seems that the very supports that allow that to happen, that they also are entitled to, continue to be trimmed away.

It's the human shell game: while we move one population toward community stability, we are pushing much of the rest, slowly but surely, straight into crisis. 

Without proper supports and proper funding for those supports, the reality is that many families will be forced to make the hardest decision of our lives - surrendering our loved ones to the state either because we will have to quit our jobs to provide full time care or we just cannot physically nor mentally do it anymore because we're already hanging on by a bare thread or both (which puts us right back where we started from and begs to question: where will they go? Can't put 'em in nursing homes, that's how we got into this mess to begin with.)

I had an exchange today with a weary and frustrated fellow mom in the eastern part of NC who is about to embark upon the grueling appeals process fighting for proper services and supports for her adult DD children that her family depends upon for their very existence. 

Yes, I said existence - not just the quality of life, certainly not for convenience and most definitely NOT for financial gain; EXISTENCE.

Like filing an appeal because services for your DD child(ren) are being drastically decreased and you simply cannot make do with less because you already are.

Through this dialogue I realized that the critical issues surrounding Medicaid appeals for DD recipients and Due Process, or lack of, are still not understood even on a basic level and misinformation continues to circulate.

Unless something has changed since June 2012 when I sent out and posted my Open Letter and Outline of Critical Medicaid Waiver Issues (with supporting documents), there remains NO FAILSAFE CONSTITUTIONALLY PROTECTED DUE PROCESS APPEALS PROCEDURE for Medicaid Waiver recipients and families

If something has changed, someone please let me know; I will be thrilled to update.

Otherwise, currently this is the way it works - or doesn't, as the case may be (from the outline):

What do we know about the Due Process / appeal procedures under the new 1915(b)(c) Medicaid Innovations managed care plan?
  • The current appeals process reflects a consumer appeals process to a unilateral hierarchy with no third-party authority to fairly referee.
  • As outlined in the PBH brochure and 2012 Provider Manual (pgs. 62-67) is as follows:
    • If consumer caregiver has recipient service hours and / or benefits reduced, suspended or terminated,
    • consumer caregiver will receive a letter 10 days prior to changes via US Certified Mail a letter, outlining instructions to request a ‘Reconsideration Review’ through PBH (or respective LME/MCO)’s ‘Reconsideration Review Process’ within 30 days of notification.
    • If Reconsideration Review, does not yield a response in favor of consumer, consumer caregiver can appeal to both DHHS and the Office of Administrative Hearings (OAH) by filing a request for a State fair hearing within 30 days.
    • Once appeal is processed, consumer caregiver may participate in an informal attempt to resolve the conflict through the Mediation Network of North Carolina;
    • if the conflict cannot be resolved in mediation or if consumer declines mediation, the matter will be set for hearing before an Administrative Law Judge (ALJ) at the OAH.
    • The ALJ will hear the matter and evidence and make a recommendation regarding the consumer’s matter and forward the decision to DMA,
    • where DMA will review and make a final decision.
  • What’s the point? More time and State financial resources wasted.
  • The only recourse following a final decision by DMA is for the consumer to retain counsel and file suit in Superior Court - an extraordinary expense of tens of thousands of dollars that the vast majority of consumer families, including mine, could not afford.
  • It should be noted that under the new PBH model, service eligibility for DD Medicaid Waiver recipients is determined by the Supports Intensity Scale (SIS) which arguably provides a more detailed client pictorial, however, the formula specifics which equates a recipient’s level of need by the State’s representative LME is deemed “proprietary information’:
    • LME representatives are required to sign and enter into a “Non-Disclosure Agreement” with PBH to protect the SIS methodology.
    • This non-disclosure further prevents a fair an adequate appeals process for consumers as how can one effectively challenge information which is withheld from them?
    • Proprietary information as such held by an agent of the State providing public services to citizens on behalf of the State - services which are funded by Federal and State monies is, in fact, a conflict of interest.
    • This is NOT transparency and only perpetuates mistrust.
  • Also noteworthy: PBH recently had a federal lawsuit against acting NC DHHS Secretary Delia and Mann [5:12-CV-46] suing to not only remove final decision-making authority from the State government entity who is to oversee and govern the managed care operation and all LME’s, but to seemingly assure totalitarian authority.
    • It is my understanding that this case has since been withdrawn.
OAH, ALJs and the Regulator Reform Act of 2011.
  • NC SL 2011-398, commonly referred to as the Regulatory Reform Act, became State Law July 25, 2011, granting final authoritative ruling to OAH / ALJs over Medicaid cases, effective January 1, 2012 and applies to cases contested after that date.
    • SECTION 32. G.S. 108A-70.9A(f) reads as rewritten: "(f) Final Decision. – After a hearing before an administrative law judge, the judge shall return the decision to the Department in accordance with G.S. 150B-37. The Department shall promptly notify the recipient of the final decision and of the right to judicial review of the decision pursuant to Article 4 of Chapter 150B of the General Statutes."
    • SECTION 33. G.S. 108A-70.9B(g) reads as rewritten: "(g) Decision. – The administrative law judge assigned to a contested Medicaid case shall hear and decide the case without unnecessary delay. The judge shall prepare a written decision and send it to the parties in accordance with G.S. 150B-37."
  • Despite the January 1, 2012 effective date for OAH final authority over recipient disputes in Medicaid matters, federally-funded Medicaid Waiver programs by design have a “single agency rule” which dictates that a single state agency makes final decisions in Medicaid issues which is somewhat conflicting given the design of the new statewide managed care waiver, therefore Centers for Medicare and Medicaid Services (CMS) must grant an exception waiver to the State of NC to permit alternate authority. Currently, NC governing officials and other interested stakeholders are working toward mutually agreeable waiver submission terms, though to date, an agreement has not be solidified.
  • Thus there remains NO appropriate fail-safe due process for recipients and families save the unrealistic and unfeasible hardship of unnecessary legal expenses and lengthy court battles.

So essentially, if you disagree with an LME's decision regarding Medicaid services / supports, you pretty much are appealing to the person who instructed the decision to be made in the first place. If that doesn't work out, you can opt to undergo mediation and have a hearing before an ALJ who will then advise DMA of their opinion, but ultimately DMA still has final say.

The confusion seems to come from in between the State Law and the federal hang-up with CMS. 

Yes, NC State Law 2011-398 does in fact grant OAH final decision making authority BUT because of the federal "single agency rule," CMS must have a specific waiver from the State of NC in order for the federal government to allow another governing entity (e.g. OAH) to make decisions which affect federal monies. 

If North Carolina officials cannot agree on the waiver language for exception and this exception waiver is not submitted and approved by CMS before the final implementation of the statewide 1915(b)(c) managed care waiver, the period for appeals will have been exhausted and we may all be stuck with whatever decisions are made for us.

If you are in an appeals process, keep your representatives and advocacy groups informed - and as always, feel free to forward to me anything you wish to share.

*Update : More on Appeals and Due Process (feedback on this post) from Disability Rights NC.

12 May 2012

Family Story: NC Creates Dilemma for the Grahams

Real Faces in North Carolina

It's not the mere idea of "change" that frightens North Carolina parents regarding the State's new Medicaid Waiver reform. We aren't afraid of change; our lives are change and adaptation - a carefully balanced juggling act that most cannot imagine, unless you live it.

No, what we are afraid of is failure. We are afraid of failing the precious children we love and care for. And without proper supports, services and assistance for our children's unique needs and circumstances, many families will be forced to make the unfathomable choice of giving their loved one up to an State operated institutional setting. 

Such a failure would be the failure of the State of North Carolina.


See NC Creates a Dilemma for the Grahams on North Carolina Health News.
Video and article by Lydia Wilson.
Lydia's Medicaid Waiver focused website: www.ncmentalhealthreform.com

10 May 2012

NCGA Meeting Time Change; Subcommittee on LME 5/14


NORTH CAROLINA GENERAL ASSEMBLY
Raleigh, North Carolina 27601

May 10, 2012
 MEMORANDUM
 CORRECTED NOTICE – TIME CHANGE

TO:
Members, Subcommittee on LME Governance     
FROM:
Rennie Hobby
SUBJECT:
Meeting Notice – Time Change
DAY
DATE
TIME
ROOM
May 14, 2012
3:00PM
544

COMMENTS: Meeting is scheduled for 3:00 instead of 2:00.

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 Rennie Hobby at 733-5639. 
  
cc:  Committee Record  _X_
       Interested Parties    _X_




* Google Calendar updated.

08 May 2012

Years of CAP Service vs. No. of CAP Workers

I posed a question today in the Facebook group, "For those receiving CAP services: How long have you received services?... and to the best of your recollection, how many CAP workers have been employed to work with your child in that time?"

Responses:
  • Crystal (me) = 19 CAP employees over 10 years
  • JC. = 2 CAP employees over 7 years
  • PF. (child 1) = 6 CAP employees in less than 3 years
  • PF. (child 2) = 6 CAP employees in less than 3 years
  • CT. = 23 CAP employees over 8 years
  • LB. = 3 CAP employees over 3 years
  • BF. = an estimated 50 CAP employees over 7 years
  • TH. = 5 CAP employees over 7 years
  • SG. = 9 CAP employees over 5 years
  • LW. = 6 or 7 CAP employees over 2 years
  • AC. = approximately 15 CAP employees over 5 years
  • RB. = 3 CAP employees in 3 years
  • KF. (child 1) = 9 CAP employees in 7 years
  • KF (child 2) = 12 CAP employees in 6 years
Can you guess the lucky exception? 
Care to speculate the reasons behind such extreme turnover rates?

The implementation of the new 1915(b)(c) Medicaid / Innovations Waivers and the service cuts it brings, will steepen and compound the improbabilities of finding and retaining reliable, trustworthy and professional direct-care staff to aid in the care, supports and life-skill goals of our children. 

While for most families, the bulk of service hours allotted will remain in the same ballpark, many others will have their hours cut due to a maximum ceiling, irrespective of individual level of need. Of the total service hours for an individual recipient, much of those hours will be shifted from the  higher paying Home and Community Supports (HCS) rate to the much lower Personal Care Services (PCS) rate, essentially resulting in a very substantial pay cut (in some cases, nearly half a worker's salary) for direct-care staff who already make less than peanuts for the important and vital work that they do - and with no benefits.


In the last 10 years, I can recall no less than 19 CAP Workers / care providers to whom I have entrusted my helpless little girl; I cannot even remember all their names as the turn-over rates for these positions is quite high. (In special parent circles, a CAP Worker who sticks around past one year is Gold.) Consider the emotional and developmental damage that such constant inconsistency creates in the daily life of a child with special needs; learning a new person, loving a new person, and losing that person – over and over again (never mind what it does to the parent). And while there have been some wonderful trustworthy care providers in our life, I wish that were the only issue... During this parade of CAP Workers, practical strangers in my home and personal space, I have experienced: the physical abuse of my child when an employee pinched my 3 ½ year old numerous times leaving dark purple and green bruises on her tiny body, thousands of dollars worth of property stolen from my home, and a week’s worth of groceries devoured that I could not afford to replace; I had an employee who took my daughter on a date with her ex-husband she’d previously had a DVPO against who was unaware she was living with a new guy; I once had two employees who became friends and later found that they spend quite a bit of time hanging out together in bars smoking and drinking with my child in their care; one girl who was fired for drug abuse; and last but not least, yet another who filed a DSS complaint against me for “abuse and neglect” in retaliation for being terminated – an incident that wasted the time and resources of 5 separate agencies, including the Morrisville Police Department, Cedar Fork Elementary School, Wake County Human Services, and the Department of Social Services. And that’s just the stuff I know about; anything else that has happened throughout the years, my daughter is unable to tell me. 
During the last Bush Administration, the federal Medicaid reimbursement rate was cut by eight dollars ($8.00) per hour, a significant amount when one considers the cost of overhead and employee salaries. Today, the average CAP Worker makes between nine to twelve dollars ($9.00-12.00) per hour when performing “Home and Community Supports” (HCS) services (this is the minimal time designated for working on pages and pages of specific life-skill goals and continuation of therapies, not unlike an IEP) and minimum wage to eight dollars ($7.15-8.00) per hour for “Personal Care Supports” (PCS) services (the bulk of allotted hours which includes bathing, grooming, toileting, etc.) and “Respite” (time built in for unscheduled relief). Comparatively, a Certified Nurse Aide 1 working in a long-term care environment in Wake County makes roughly $13.03 hourly, while a Wake County Teacher Assistant in Special Education averages $10.27 per hour and a Wake County Public Schools Custodian, $12.80 per hour, not including benefits or shift differential. For the record, the average Garbage Collector in the State of North Carolina is paid an average hourly rate of $11.75. A CAP Worker receives only their hourly wages with no benefits whatsoever when working consistently less than 30 hours weekly, not even mileage reimbursement to offset the cost of driving their clients around in their personal vehicles attending community activities as dictated by their care plan.

Suffice it to say that the vast majority of families not utilizing the maximum amount of service hours allotted are not choosing not to do so because the need is not present. Quite the contrary, there is a critical need that cannot be staffed with competent, quality, reliable, professional care providers dedicated to a profession that includes a daily routine of cleaning feces, urine, and vomit; preparing special foods and feeding; heavy lifting; changing G-tubes and catheters and diapers; administering medications; bathing and dressing; utilizing sign language and specialized communication devices; and completing endless amounts of paperwork tailored to a non-applicable medical model to justify their existence all while being subjected to nerve-racking and often abusive behaviors such as hitting and biting, because frankly, people can make a better salary emptying garbage cans than caring for an innocent human being unable to do for themselves.
* If you would care to share your stats regarding years your loved one has received CAP direct-care services and the number of CAP workers that have been employed in your home to care for your child, likewise any related stories regarding difficulties in direct-care coverage, experiences, etc. please feel free to respond to this blog post, post in our Facebook group or contact me privately via no2nchb916@gmail.com.