Showing posts with label Developmental Disabilities. Show all posts
Showing posts with label Developmental Disabilities. Show all posts

28 February 2013

What's New in January & February?


January and February 2013 news, events, and updates.

February
January

21 February 2013

Maintaining Mental Health Services for All

Maintaining Mental Health Services for All

Help Dr. April Harris-Britt and staff continue to serve children, adults, and families who will lose access to much needed mental health services in NC.

[ original post and fundraising page ]

This campaign is to raise legal funds, so that we can continue to fight for the children, adults, and families who will have limited or no access to much needed mental health services.

Short Summary

Our mental health agency has served individuals in our community for 8 years. We provide therapy for children and adults of all ages and backgrounds. A considerable portion of our work is focused on working with children in the foster care system, children who have been abused, and those with developmental disabilities. We provide psychiatric medication management, parenting classes, social groups, and psychological evaluations. We employ more than 25 people, including a Psychiatrist, Psychologists, Counselors, Social Workers, a LMFT, support staff, and even a local high school intern. We are a group of highly skilled, dedicated clinicians who remain committed to serving individuals of all backgrounds and needs, including the Medicaid population ignored by many others. We are requesting your help to continue doing so.

As you have probably heard, there has been enormous scrutiny of the NC Medicaid program and mental health services over the past few years. In a recent effort to revise and improve the system, a process was put into place that has disproportionately and adversely affected licensed independent providers such as at our Agency, and our ability to offer Medicaid services in the future

One such process involves the State requiring providers to submit all of their paperwork to a contracting agency called CCME that will then review and possibly approve payment to be made months after the client has been seen. There is no surprise that CCME has many flaws, inaccuracies, and inefficiencies in their system for monitoring providers. Even worse, they have a financial advantage to rejecting the claims – they get to extend their contracts for saving money. A CCME representative told us directly that they would be "working themselves out of a job" as they moved people off of prepayment reviews. A CCME representative told us directly that there are "tricks" that could ensure that we were taken off of prepayment.We have not tried any tricks as we naively believed that the system would work out!

Believe it or not, providers can not appeal this process. Within the past few weeks, numerous small, large, and long term providers in the area have already either gone out of business completely or stopped taking Medicaid. You will likely be hearing more and more about providers who have either gone out of business or who are no longer going to provide such Medicaid services.

These are a few links that may be helpful for you to put the story into context and to understand that laws have been broken by the DMA/DHHS (the Agency that runs Medicaid), not the providers.

http://www.wral.com/audit-mismanagement-costs-nc-medicaid-system-millions/12048026/

http://medicaidlawnc.wordpress.com/

http://www.wral.com/nc-auditor-dhhs-improperly-paid-580k-in-overtime/12108305/

http://www.wral.com/providers-getting-squeezed-out-by-medicaid-rules/12085183/

The answer to these political problems should not be to cut Medicaid or to limit the number of providers. If we do, there will be individuals in our schools, workplaces, and communities without needed mental health services. They will likely face higher frequencies of academic, legal, and negative societal outcomes.

I have filed several legal motions due to this being an unconstitutional action and the DMA/DHHS/the State not following policies and procedures to support providers and families needing these services. Our Attorney, Knicole Allen Emmanuel has worked in the State Attorney General’s Office in the past and is now fighting on behalf of providers and small business. We need your help to raise $25,000 in legal funds to fight this process. The outcome of this fight may help establish a precedent that could benefit others. Any amount raised over this amount will be used to cover services for the many families who have already lost their therapy. No amount is too small and we do appreciate your support.

Other Ways You Can Help

If you can not make a contribution, we understand. But please share our campaign with others and spread the word about how these types of actions can and will impact the children and families in our schools, neighborhoods, and communities.

19 December 2012

Connecticut Shooting Raises Questions About Autism


From DisabilityScoop


Connecticut Shooting Raises Questions About Autism

By 
News that the gunman responsible for the Connecticut school shooting last week was reportedly diagnosed with Asperger’s syndrome is coming with a dose of caution from autism advocates.
A law enforcement official told The Associated Press over the weekend that Adam Lanza, 20, had Asperger’s. Lanza killed 26 people at the Sandy Hook Elementary School in Newtown, Conn. Friday, most of them children in the first grade.
But autism advocates say the diagnosis does not explain the mass shooting and point out that there is no link between the type of planned violence that Lanza displayed and the developmental disorder.
“There is absolutely no evidence or any reliable research that suggests a linkage between autism and planned violence,” reads a statement from The Autism Society. “To imply or suggest that some linkage exists is wrong and is harmful to more than 1.5 million law abiding, non-violent and wonderful individuals who live with autism each day.”
Those who knew Lanza described him to The New York Times as shy and socially awkward. While those traits are characteristic of autism, self-advocates caution that having the condition does not suggest whether a person will do good or bad things in life.
“While the majority of statistics prove that we are infinitely more prone to be the victims of violence than the perpetrators of violence, we are not immune from becoming people capable of making terrible, horrible choices. No one is,” said Michael John Carley, executive director of the Global and Regional Asperger Syndrome Partnership.
Nonetheless, experts at the Judge David L. Bazelon Center for Mental Health Law said the tragedy calls attention to the lack of mental health services currently available.
“The real problem is that community based services — including mobile crisis services, assertive community treatment, peer supports and supportive housing — are in short supply, delaying hospital discharges and resulting in mental health crises that could otherwise be prevented,” the organization said in a statement. “A stronger commitment to vital community mental health services is long overdue and must be paired with improved gun laws in order to prevent future tragedies.”

18 December 2012

Disability Caregiving Can Be Health Hazard, Study Finds

Great article from Disability Scoop (...though not a surprise to those of us who live it every day!)

[ view original article here ]


Disability Caregiving Can Be Health Hazard, Study Finds

By 
Parents of children with developmental disabilities are experiencing health consequences stemming from their caregiving responsibilities, a first-of-its-kind study suggests.
Researchers found that parents of those with developmental disabilities have higher blood pressure than those with typically developing children. Given the risk of cardiovascular disease facing such parents, the finding “reinforces the notion that caregiving is hazardous to one’s health,” researchers report in the study published this month in the journal Research in Developmental Disabilities.
For the study, researchers followed a group of 35 parents of children with developmental disabilities and a control group of 30 other moms and dads. All of the parents wore a blood pressure monitor for 24 hours and each responded to questions about themselves, their stress level, the types of behaviors their child displays and the extent of support they receive from others.
Overall parents of kids with developmental disabilities reported a higher level of perceived stress, more challenging behaviors and less social support. What’s more, the parents of kids with special needs had higher blood pressure on average at all points during the 24-hour period, the study indicates.
Significantly, when researchers controlled for various factors, they found that challenging behaviors and stress level were not associated with the blood pressure level recorded, but the amount of social support was.
“We found these parents, who were mostly caring for children with autism and Down’s syndrome, were more stressed and had less social support had higher blood pressure than other parents,” said Stephen Gallagher of the University of Limerick in Ireland who led the study. “More importantly it was reporting of lower social support that seemed to explain the higher blood pressure in these caring parents.”
The study is the first to directly measure and compare the blood pressure of these two groups of parents, researchers said.
Gallagher and his colleagues said the findings highlight the need for better supports for caregivers.

01 December 2012

Important Info. re: SIS


Forwarded to me by a provider / mother...
*Note attachments below.

-----------

The Supports Intensity Scale—SIS—is the new tool used to determine the level of services and supports needed for people on the Innovations Waiver. I have attached a copy of the child version and the adult form (age 16 and up).  Currently, DDTI is scheduling these interviews for about 5,000 people.  If you have not been selected yet, the SIS will be completed before the 2014 plan of care is developed.  

I have participated in one child and one adult interview. It is very different from the NC-SNAP in that the person and his/her family and staff are asked to identify what types of supports are needed in order to accomplish a variety of activities. Specifically, you will be asked to rate the frequency, time and type of support needed for your family member. A same aged, non-disabled person is the point of reference. There are 57 questions in the adult version with more than that for children. Remember that each question has the three component parts.   The first question is presented below as  a sample.

Please pay attention to this interview tool. It  is critical because the budget for your family member’s services will eventually be tied to the SIS outcomes. While you can appeal the results of the interview, it is important that you be prepared for the two to three hour session.  Print the form down and review it. The child form is longer and the document has more description of the instrument, but review it.  Make certain that you take with you the staff person (or two!) who know your child’s needs best. I completed the form in anticipation of my adult son’s interview. He was unhappy with having to talk about himself and he did not make it through even half of the interview before he left. That didn’t bother the interviewer. I also took a list of his diagnoses and medications with me as well and had examples and illustrations.

EXAMPLE:  Using the toilet. 

Compared to a same aged, non-disabled person, what is the frequency of support needed?
O = none or less than monthly
1 = at least one a month, but not once a week
2 = at least one a week, but not once a day
3 = at least once a day, but not once an hour
4 = hourly or more frequently

Compared to a same aged, non-disabled person, what is the daily support time needed?
0 = none
1 = less than 30 minutes
2 = 30 minutes to less than 2 hours
3 = 2 hours to less than 4 hours
4 = 4 hours or more

Compared to a same aged, non-disabled person, what is the type of support needed?
0 = none
1 = monitoring
2 = verbal/gestural prompting
3 = partial physical assistance
4 = full physical assistance

23 October 2012

An Open Letter to Ann Coulter & then some...

Personally, I take no issue with conservatives, generally speaking, nor do I take issue with liberal thinking - everything in moderation as they say. Most of us have sound wisdom and skills worthy of contribution to the world... Just think what we could all accomplish together if we stopped the ridiculous power-plays and political tangos we engage ourselves in tirelessly - time, energy, and resources that, if spent wisely and consciously, could ease the suffering of so many on this earth and in this very country - in our own communities - if we'd just stop trying to force our own ideals, beliefs, and way of life upon others... Though apparently, being self-righteous is a slippery slope - and a long fall off the proverbial turnip truck.

I am rarely a soul of few words and yes I have much I would like to say in response to Ann Coulter's vile remark, "I highly approve of Romney's decision to be kind and gentle to the retard."

Really Ann? You had to go there? Could you think of no sharper dagger to poke into the gentlest hearts of mankind? And you think this strengthens your platform or lends credibility to your cause? I'm pretty sure even your beloved Republicans are sickened by your cruel thoughtlessness too, at least they should be. Because, regardless of what side of the political fence you ride, there is absolutely NO EXCUSE for your hateful comment. It's not the President you hurt with your idiocy. You just spat in the face of millions... Millions who are much stronger than you. 

Millions who love and know love like you only dream of.

Shame, shame on you Ann Coulter.

I could go on... But I could not say anything any better than Mr. John Franklin Stephens.
Thank you Mr. Stephens. You do us proud.

-----------


An Open Letter to Ann Coulter
Posted on October 23, 2012 by Tim Shriver


The following is a guest post in the form of an open letter from Special Olympics athlete and global messenger John Franklin Stephens to Ann Coulter after this tweet during last night’s Presidential debate.

Dear Ann Coulter,

Come on Ms. Coulter, you aren’t dumb and you aren’t shallow. So why are you continually using a word like the R-word as an insult?

I’m a 30 year old man with Down syndrome who has struggled with the public’s perception that an intellectual disability means that I am dumb and shallow. I am not either of those things, but I do process information more slowly than the rest of you. In fact it has taken me all day to figure out how to respond to your use of the R-word last night.

I thought first of asking whether you meant to describe the President as someone who was bullied as a child by people like you, but rose above it to find a way to succeed in life as many of my fellow Special Olympians have.

Then I wondered if you meant to describe him as someone who has to struggle to be thoughtful about everything he says, as everyone else races from one snarkey sound bite to the next.

Finally, I wondered if you meant to degrade him as someone who is likely to receive bad health care, live in low grade housing with very little income and still manages to see life as a wonderful gift.

Because, Ms. Coulter, that is who we are – and much, much more.

After I saw your tweet, I realized you just wanted to belittle the President by linking him to people like me. You assumed that people would understand and accept that being linked to someone like me is an insult and you assumed you could get away with it and still appear on TV.

I have to wonder if you considered other hateful words but recoiled from the backlash.

Well, Ms. Coulter, you, and society, need to learn that being compared to people like me should be considered a badge of honor.

No one overcomes more than we do and still loves life so much.

Come join us someday at Special Olympics. See if you can walk away with your heart unchanged.

A friend you haven’t made yet, John Franklin Stephens
Global Messenger
Special Olympics Virginia

EDITOR’S NOTE: John has previously written powerful opinion pieces on the R-word. Read one here.

CAP-IDD ... this is NOT NC Innovations

From Mary K. Short:


The links to the announcements and guidance are below.  The changes from CAP-MR/DD to CAP-IDD are approved by CMS on 10/1/2012 BUT are not implemented until 1/1/2013.  If you are in an LME that is supposed to convert to an MCO before or on 1/1/2013 THIS DOES NOT APPLY TO YOU (or if you are already on the NC Innovations waiver) because you should be working on the transition to the NC Innovations waiver for your LME/MCO "go live" date prior to or on 1/1/2013.  The Special Medicaid Bulletin is specific about timelines and who is and who is not impacted.
Additionally, this is part of what Doug Sea sent out to providers/case managers.  I know he works with DRNC (Disability Rights North Carolina www.disabilityrightsnc.org) and you should probably contact them if you have questions.  If you are in Legal Services of the Southern Piedmont area (Mecklenburg & surrounding), then contact LSSP at www.lssp.org.
The instructions do not include the right to request continuation of current services as a reasonable accommodation under the ADA. Nor do the instructions provide for the right to a notice with appeal rights if such a request is made and denied. It will be up to advocates and providers to let families know they have the right to submit such a plan and to appeal to OAH if denied if they are at serious risk of institutionalization without continuation of their current services. Please make families aware of this.  
Essentially the same issue will occur for families transitioning to the Innovations waiver on January 1 .  Those 36 counties are also listed in this bulletin.
Here are some other possible specific issues to look for as CAP-DD families transition to the new CAP-IDD waiver (for a short time) and to the Innovations waiver:
A.      if LME doesn’t have adequate provider network, can family continue to be paid to provide home support services?
B.      If rate paid to provider is changing (eg no more enhanced personal care services or enhanced respite) and new rate is inadequate to attract qualified provider for this recipient, can recipient appeal rate reduction/loss of enhanced service?
C.      Does the requirement that  Intensive In home support have a fading plan and the 6 month limit for intensive night services violate the ADA or EPSDT?
D.      Does the restriction on services during school hours violate EPSDT if the child requests personal care (not hab serv) in excess of that limit?
E.       Does child recipient have right to case management in addition to care coordination under epsdt if medically necessary in that case because the LME staff are not adequately trained or don’t do medically necessary work the current case manager has been doing?
F.       Does the LME violate due process by “crosswalking” to new services without explaining right to request continued current service and to appeal if denied?
Mary K. Short
828-632-5888 or 704-451-4144 (cell)
Special Medicaid Bulletin:
http://www.ncdhhs.gov/dma/  (SCROLL down, it's the first bullet point on the left.)
OR direct link to the Bulletin:
CLINICAL POLICY 8M:
(Clinical Policy 8M ... this is the IDD 8M.  I do not have an answer for how it got approved and posted without an additional comment period!)

05 October 2012

A Day in the Life...

Lots of people have hectic lives. Apparently, it's the new norm. We barely have time to sync our tech devices designed to simplify our hectic lives.

These days we're all running ourselves into the ground trying to keep up with the necessities of life, let alone the rest of our "To Do" lists. Anyone with a job or children is swimming in a bubbling cesspool of stress and chaos; those with jobs and children are just trying our best to stay out of the psych ward... and for those of us who work and have children with special needs, God help us, because a mental health breakdown emergency just isn't an option - especially if you live in North Carolina!

A couple of months back, I was filling up at a local gas station and chatting with the kindly manager about the damaged fuel pump which had been knocked ajar from its island perch. He tells me that people are so busy, distracted and hurried that they don't pay attention to what they're doing... "I can believe it," I tell him, "I've seen people drive off with the pump nossel still inserted in their gas tanks." He shook his head and tells me that that happens at his store at least 4 or 5 times a month.

Why do I bring this up? Because we, as a society, all need to slow down and pause!

We need to take a step back, take inventory of our lives, our purpose, our priorities and our conscience... To take a look at what's really important to us right now in this moment. Are we where we need to be? And even more importantly, are we being the best of who we are in every decision we make? Especially those in positions of authority... Like those whose names you'll see on the ballots this fall.

Whether you're "just a parent," a laborer, professional, CEO, a politician, or an ordinary Joe - consider: what will be your legacy? Will you be remembered for your uncompromising compassion and honor for humanity or will your eulogy read like a padded resume?

Every decision creates action and every action has an impact -- upon us individually and upon the world around us. Sometimes we don't always get to see it and most often, we don't go looking. Ignorance is bliss as they say. 

Sometimes I wish I could be blissfully ignorant. But I digress...

So lemme share with you the catalyst for this post; a recent adventure in my special mommie life as can only be imagined by other special parents - a typical, atypical day if you will:

This past Thursday, I finally got around to taking my 6-year-old son to the pediatrician for his Kindergarden Heath Assessment and shots as it was the very last day before the school would have to kick him out (frankly, considering I've had over 20 doctor's appointment this year for my daughter, I naturally forgot the "typical" child).

When I was Liam's age, I was deathly afraid of needles. (Of course, I happened to have the nurse from hell back then who loved nothing more than a tender young caboose for target practice...) I spent quite a bit of time talking to my little guy about the reason we must have certain vaccinations, breathing techniques, how he had to be very brave, and it would only hurt for a moment.

When the time came for his two shots, my little man was so very brave he barely flinched and shed nary a tear! I was over-the-moon proud and tried my utmost to make the rest of the day be a celebration of his triumphant big-boy milestone... though it was short lived.

Not two hours later as we played in the back yard waiting for Daddy to come home so we could have a special dinner and tell him how awesome and brave our big boy had been, Miss Kim, Isabel's  wonderful Habilitative Tech (direct care worker), came running through the door in a worried fit of panic and announced that Bell had just eaten a wild mushroom at a nearby park. Oye.

Yes, it seems that our daughter, who has never been in the habit of eating random stuff off of the ground (though an unattended picnic is another matter), decided to help herself to a little snack... I certainly don't fault Miss Kim in the least; Isabel is quick like that, especially after she's heard her name combined with the word "No!" But now the party was over and Liam was left to entertain himself as we sat about trying to figure out what to do.

According to Dr. Larry Grand, mycology expert and Professor at the NCSU Department of Plant Pathology, 98% of all mushrooms are not poisonous; however digestion of the other 2% can produce results ranging from "a minor upset stomach to a rather painful protracted death, depending upon the species of mushroom eaten, the amount eaten, and the person who has eaten it." 

After spending some time perusing internet photos of mushrooms in an effort to try to identify what percentile Bella's snack fell into, we narrowed it down to the Bolete species (as evidenced by the presence of pores rather than gills on the underside of the mushroom cap) - of which there are many, many varieties, most of which being edible varieties, though, a few being deadly 'evil twins.'

I attempted to reach Dr. Larry Grand by phone as well as emailed to him photos of the remainder of Bell's snack, then heeding Dr. Grand's "Steps to follow if it is suspected a person has eaten an unidentified mushroom," I packed an overnight hospital bag for me and Isabel in anticipation of a long night ahead involving Ipecac cocktails.

Poor Liam. Once again, it was no longer about my "typical" child, rather his proud and special day was overshadowed, no - pushed to the back and buried, by yet another freak emergency resulting from his sister's unintentional antics. --That is not to say that I wasn't worried and frightened for my daughter as any parent would be in such a situation. Though when you have a child with the cognitive understanding of a perpetual toddler, emergencies, accidents, incidents, outbursts, etc. are an all too common occurrence - and yes, the whole family's life, schedule, and system of being, more often than not, revolves around the child whose excessive needs demand your constant attention and care. Everyone else sucks it up and moves to the back of the bus. (Heck, truth be told, parents aren't even on the damn bus. We're kinda running along behind it trying to keep up.)

My proud big brave boy, who had not shed a single tear during his shots earlier that day, was still crying when I left with his sissy for the hospital. 

We arrive at the children's ER, I give Bell's name to the lady behind the desk and begin explaining why we're there while Isabel grabs everything on her desk, starts signing "potty" emphatically (not because she actually has to go, but rather to steer my attention back to her), before she spies the hand sanitizer and sprints off across the lobby to douse her hands. We're told to have a seat and someone will call our name.

While simultaneously praying that my child had not poisoned herself, I was filling with dread (and guilt and heartache) imagining a sleepless night of shrieks, being hit and slapped by an angry sick child, and  fun with vomit. --A half hour or so had passed when my husband called to say he had just spoken to Dr. Grand (God bless him!) who, thankfully, was able to positively identify the mushroom remains from the photos as a non-poisonous variety. Isabel would be fine.

Thank you, thank you Dr. Grand!

As I said, a typical, atypical day in our life, the life of a family caring for and loving a child with profound developmental disabilities... There is no pause for us, no down time, we never get to clock out or recharge, plans are subject to change constantly and there is never a dull moment - and we just roll with it because it's what we do. Because we love our children unconditionally.

We've all heard the proverb, "It takes a village to raise a child." Well, it takes a society to care for special populations - our most vulnerable and pure of heart. We cannot do it alone and we cannot make do with less - we already are.

Now, back to legacies: I can only guess what colorful descriptors might comprise my eulogy one day... stubborn and strong-spirited, honest to a fault, opinionated, moody, mouthy, fearless and strong, aggressive and somewhat intimidating... while I've heard it all and then some at one point or another and perhaps there's some truth there; I take no issue either way. 

Though I hope somewhere in there someone will be able to say: She was loyal and genuine and compassionate; she always spoke her truth and always fought for what she knew to be right and just with a clear conscience... I hope they can say: She was a great mother and loved her two beautiful, amazing children; there was nothing more important to her than nurturing their little souls... and she never, ever gave up.

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...

02 September 2012

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. ;-)


31 August 2012

What's New in August

August 2012 news, events, and updates.


SIS [Supports Intensity Scale] Community Forums

FYI...

Important information about Supports Intensity Scale (SIS) evaluation will be shared in these Community Forums.... this information is for those affected by IDDwho currently receive and those who do not currently receive CAP services.... you have to register to attend! Please be sure to click on link in the email forwarded below!!

Note that all areas of NC will be under Innovations Waiver in January according to current set timelines. Innovations Waiver is replacing the CAP Waiver. The SIS evaluation will go into effect as one of the tools of choice for determining need for services for those affected by IDD. These evaluations will be done by trained teams in each area. For most up-to-date info, please attend one of these sessions in your area!

Anna

p.s. The closest one to those in Durham / Raleigh is on Monday, Sept 24th from 5-8pm at Alliance Office located at 4600 Emperor Blvd, Durham (near RTP in the 540/40 area). Register early to secure your seat!

----- Forwarded Message -----
From: "Titus, Trina" <trina.titus@dhhs.nc.gov>
To:
Sent: Friday, August 31, 2012 1:47 PM
Subject: SIS [Supports Intensity Scale] Community Forums

Please see the information below regarding the Supports Intensity Scale.
http://ddti.unc.edu/CommForSIS.asp

Thank you.

Trina Titus
Administrative Assistant
DHHS/Division of Mental Health
Advocacy and Customer Service Section
P: 919.715.3197

30 August 2012

DOJ Settlement Good for People with Mental Illness, but May Leave People with I/DD Out

From The Arc of North Carolina

DOJ Settlement Good for People with Mental Illness, but May Leave People with I/DD Out

[ view at ArcNC.org ]

While it is too soon to know what the U.S. Department of Justice (DOJ) Settlement will mean for people with mental illness, now is the time to begin thinking about the effects it will have on our Mental Health/Developmental Disability/Substance Abuse (MH/DD/SA) system.

We appreciate the N.C. Department of Health and Human Services (DHHS) and DOJ finding a way to avoid costly litigation by reaching a settlement. While people can argue about the settlement’s details, there is really no question that NC’s placement of people with mental illness [and people with I/DD] in adult care homes is not appropriate. These settings were designed for people who are elderly, and are not settings where individuals who are young and have a disability will thrive. Spending large amounts of money defending a federal lawsuit would have been a true waste of taxpayer money.

The settlement does several things. The core of it requires the state to create new housing options [defined as slots]. These housing slots will include rental assistance and support services for 3,000 people, 2,000 that currently live in adult care homes, and 1,000 that are in jeopardy of being placed in adult care homes (or rest homes, as they are sometimes called) by 2020. It also requires the state to create, or increase, the availability of community services for people with mental illness including supported employment and additional Assertive Community Treatment Team services. The effort will have an independent monitor who will hold the state accountable. If the state fails to meet timelines, the DOJ can take the State to court.

One of the most disappointing parts of the Settlement is its lack of inclusion of people with developmental disabilities. Though the original complaint was about people with mental illness, there is no doubt that NC continues to rely upon similar institutional settings for people with I/DD. That people with I/DD were leftout of this settlement is concerning. Not only is the state allowed to continue its bias towards institutional settings in placements, community options made available to people with mental illness could come a the cost of community options for those with I/DD, given the State's limited resources.

Creating “scattered-site housing” is a great idea for all people with disabilities. The Arc continues to develop housing options that meet this criteria, but it is a slow process. We are also concerned that policy-makers in Washington and NC are adhering to conflicting policy in terms of housing and people with disabilities. One example is the HUD (US Dept. of Housing and Urban Development) funded properties The Arc manages for people with mental illness. Many of the properties are apartments that will not meet the scattered-site definition, yet have rental assistance vouchers as part of the project. Under the settlement agreement, very few of these properties will be available for people coming out of adult care homes. The changes that would be needed to make them available for these people currently run afoul of federal HUD regulations. We hope the DOJ and HUD will work together so future efforts will not exclude housing options promoted by federal agencies.

While the state has agreed to this promising settlement, we have significant related problems in our service system that must be addressed. One such problem is the crisis that will be created if we do not find a solution to the personal care issue. While the state will be creating community housing options for one group of individuals, others will be losing services and potentially their housing. This is not the way a system should work. While it is impressive that the General Assembly found funds to support the settlement, it should be noted that critical services are being sliced because of budget cuts at the same time.

While this settlement agreement is a step in the right direction, it is far from perfect. It does much for people with mental illness who have faced institutional bias, but at the same time it does nothing for people with I/DD facing a nearly identical problem. This is an opportunity for the leadership of the General Assembly and Administration to proactively take the spirit of this settlement and apply it to other populations. The best possible outcome is a more responsive system for all.

On Wednesday of next week the legislative Blue Ribbon Commission on Transitions to Community Living will hold its first meeting. Hopefully this committee will be the catalyst to create such change.

Crisis for those Receiving Personal Care Services


Crisis for those Receiving Personal Care Services


On August 14th during the Health and Human Services Oversight Committee meeting, members of the General Assembly and others got a first look at the impact of their special provision changing the requirements for Personal Care Services for people with mental illness and developmental disabilities. What they saw was not good.

Within this year’s budget, the legislature set new guidelines on who qualifies for Personal Care Services. The changes were in response to legal action by the Center for Medicaid Services (CMS) that required the state to address comparability between in home care services and those services provided in licensed group and adult care homes. In other words, the State had to make it just as easy for someone to receive Personal Care Services in a community setting as it was to receive them in an institutional setting, as long as it costs the same or less to do so.

To meet new eligibility standards, recipients must have a medical condition, disability, or cognitive impairment. They also must require limited hand-on assistance with three activities of daily living (ADLs), or hands-on assistance with two ADLs including one at the extensive assistance or full dependence level (clinical terms). The ADLs that qualify are bathing, dressing, mobility, toileting and eating.

Tara Larsen, Chief Clinical Operations Officer of DHHSs Division of Medical Assistance, opened the presentation by reviewing the legal situation surrounding the change in PCS eligibility. She reviewed the process that the state is undertaking to evaluate all current recipients of PCS to see if they will continue to receive this Medicaid service under the new requirements. Ms. Larsen informed the members that the target date for completion of these assessments is November 30, 2012.

During the presentation, one slide stood out. That slide detailed the significant effect that this change will have on people with mental illness and developmental disabilities living in group homes and receiving PCS. According to DMA (Division of Medical Assistance), 86% of residents with I/DD in group homes will not qualify for PCS under the new rules and 100% of residents with mental illness will not qualify.

In total 12,000 North Carolinians will see their Personal Care Services eliminated under the new rules.

DHHS, DMA and the legislature has yet to articulate a response to this looming crisis. The current budget did allocate $39 million dollars to be used to assist adult care homes in transitioning their residents who do not qualify under the new rules, but that is just a fraction of the affected residential settings. For the people in mental health group homes and DDA group homes, their wait for help continues.

The Arc continues to work with DHHS, DMA, and the legislature on this imminent crisis. We will keep you informed as the situation progresses, and let you know when we fill grassroots action is needed.

25 August 2012

Apples, Oranges & Supported Employment

With all the talk of community support, naturally the issue of supported employment for persons with intellectual / developmental disabilities comes up... After all, doesn't everyone need to be needed and have a sense of accomplishment? Does not every life have a purpose?

A while back, I met with NC Representative Bill Current to discuss my concerns surrounding the statewide Medicaid overhaul and the recipients and families who will be affected. Dr. Current, a retired dentist, is a kindly conservative southern gentleman rooted firmly in his strong beliefs of integrity and hard work among other things - and does not hesitate to share his views regardless of yours (much like my late grandfather, a WWII veteran and former magistrate). I liked him immediately.

We chatted briefly about UNC (his alma mater), UNC basketball, and changing times in the field of dentistry before settling down for business. Before I could get started, Dr. Current was quick to share with me his position regarding government handouts and free for alls. I listened quietly as he spoke and then I told him,

"I agree completely."

I highlighted for him my 7 years as a struggling single parent raising a young child with disabilities without child support or much of any other... of undergoing a major back surgery when my child did not walk, going back to school, working and eventually buying my first home on my own - never once receiving government assistance, because I made too much money to qualify and some months, not even enough to live on.

I told him I knew exactly what he was talking about, that I could fill up a page on his legal pad with names of people I knew on welfare or capable persons receiving disability who have made a career mooching off the system, residing in supplemented housing and living and eating far better than my own family and driving brand new SUVs - and my husband and I work our butts off.

"But let's separate the apples from the oranges. I'm talking about a population of people who would do absolutely anything to be able to work, give back, and have a sense of independence, pride and accomplishment. People who desperately want to have just a taste of what the rest us us take for granted every day..."

So, today when I saw this image from The Arc of San Francisco, promoting supported employment through their We Can Do It program, I could not help but smile all the way through! It is absolutely, positively AWESOME and I LOVE IT!


Saturday Humor for Special Parents

Hard to imagine a world without Facebook isn't it? A life our children will never know. I mean, where ever would we get our latest news and entertainment without it? 

We've all seen these smart aleck little ecards swimming around our inboxes, Facebook and Pinterst and while they often make me chuckle, I just had to share this one for the parents out there who, like me, have received loads of unsolicited and painfully unhelpful parenting advice from usually well-meaning strangers and even experts over the years... This one I can truly appreciate. =)


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.