Showing posts with label real life. Show all posts
Showing posts with label real life. Show all posts

28 February 2013

What's New in January & February?


January and February 2013 news, events, and updates.

February
January

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.

12 December 2012

WRAL (SpED) Teacher of the Week

WRAL Teacher of the Week: 'I'm trying to give them hope'


Kudos and congrats to WCPSS Martin Middle School's Coach and Special Education Teacher, Mr. Stuart Vickery for being recognized as WRAL's Teacher of the Week! - and much well-deserved I might add (last year he also received an award for Teacher of the Year).

Mr. Vickery is without a doubt, an outstanding example of community spirit. I know this because he is my daughter's beloved teacher this year. --You'll recognize Isabel as she is the only girl in the class, a status which she thoroughly enjoys - and none to my surprise, WRAL caught her on camera swatting at one of the assistants during this piece. That's my girl.

My only beef with this feature is the media reframing as denoted in the headline, "I'm trying to give them hope" - a partial exert from Mr. Vickery's explanation of why he does what he does... But he says oh so much more... He says, "Their whole lives they've been taught what they can't do, and I'm all about what they can do... I'm trying to build their self esteem, trying to make them feel better, and I'm trying to give them hope too." Vickery goes on to explain that the reach goes beyond the students and the importance of a positive impact on everyone in their lives... 

Everyone needs hope in life, but these kids are hardly hopeless... These kids ARE HOPE. And that is what community is all about; that is what Stuart Vickery brings to the table - focusing on what they CAN do... and what they CAN do is LOVE. 

We can all take a lesson from these kids and teachers like Stuart Vickery.

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.

23 September 2012

Day Dreams from an Autistic Mind

Things tend to spread like wildfire on the net, with social networking fanning the flames... sometimes, there are jewels, like this gem from a Facebook page, Day Dreams from an Autistic Mind (click on the image to enlarge):


I loved the way this mom so succinctly summed up the challenges we face from those on the outside looking our way, and more importantly the sole reason we do what we do - for the love of our children.

Because I recognized the images are personal (with the exception of the upper center and cartoon), I contacted the mom to request permission to share her message and inspiration. She kindly obliged and included the following about her family:
"I am a mother of two children, Emma is 4 1/2 and Lukas is 3. He was diagnosed with Autism on November 17, 2011. He is moderately Autistic. He is also nonverbal. As soon as we found out we put him in early intervention that changed our lives. He is very smart and very clever. He is now in an Integrated Preschool using the TEACHH program and he gets OT, PT and ST. He is am amazing little boy and I love him just the way he is."
Thanks to Emma and Lukas's awesome mom for reminding us what it's all about! =)

13 September 2012

10,000 Blog Views! and Counting...

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

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

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

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

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

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

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

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

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

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

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


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

Oh, I mentioned 63 counties; here they are... Clicking on the County links below will take you to the corresponding State representatives page on the North Carolina General Assembly's website.
  1. Alamance County 
  2. Beaufort County 
  3. Bertie County  
  4. Brunswick County 
  5. Buncombe County 
  6. Burke County 
  7. Cabarrus County 
  8. Caldwell County  
  9. Catawba County 
  10. Cherokee County 
  11. Cleveland County 
  12. Cumberland County 
  13. Dare County 
  14. Davidson County  
  15. Duplin County 
  16. Durham County  
  17. Edgecombe County 
  18. Forsyth County  
  19. Franklin County  
  20. Gaston County 
  21. Granville County  
  22. Guilford County  
  23. Halifax County  
  24. Harnett County 
  25. Haywood County  
  26. Henderson County  
  27. Hertford County  
  28. Hoke County  
  29. Iredell County  
  30. Jackson County  
  31. Johnston County  
  32. Jones County  
  33. Lee County  
  34. Lenoir County  
  35. Lincoln County  
  36. Macon County 
  37. McDowell County  
  38. Mecklenburg County 
  39. Monroe County *voter representation falls under Union County
  40. Moore County  
  41. New Hanover County  
  42. Onslow County  
  43. Orange County 
  44. Pasquotank County  
  45. Pender County  
  46. Pitt County  
  47. Polk County  
  48. Randolph County  
  49. Robeson County  
  50. Rockingham County  
  51. Rutherford County  
  52. Sampson County  
  53. Stanly County  
  54. Stokes County  
  55. Transylvania County  
  56. Union County  
  57. Wake County 
  58. Watauga County  
  59. Wayne County 
  60. Wilkes County  
  61. Wilson County  
  62. Union County  
  63. Yancey County  
To find out who your voting representatives are, visit the NC General Assembly search page.
For more on who's involved and how to advocate, see Speak Up!

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...

31 August 2012

What's New in August

August 2012 news, events, and updates.


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!


24 August 2012

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.

06 August 2012

WRAL re NC MH Reform & Parent Info.

WRAL report re Managed Care and IDD, etc.
1 message


MaryKShort@aol.com <MaryKShort@aol.com>Sun, Aug 5, 2012 at 11:15 AM
To: MaryKShort@aol.com

FYI ... very well written and researched article by Mark Binker at WRAL.com.  I can see that there are a lot of good talking points to use when you contact your elected representatives to express your concerns or your experiences. 


In the article, a Ms. Laurie Haley is quoted:  Laurie Haley has seen ups and downs as North Carolina has slogged through mental health reform efforts over the past decade. For a three-year period from 2005 through 2008, she said, reform seemed to have worked for her daughter, Alissa. Other times, dealing with local and state mental health bureaucrats was more fraught.

That period of time covers the pre-Home Supports service definitions.  I happen to agree totally with her EXCEPT for the fact that it was at the end of 2007 and into early 2008 when the state first tried to implement the 40-hour limit!  I don't know if she was impacted by that at the time or if she even knows it is part of the Innovations waiver.  I have written the reporter to ask.

Mary K. Short
828-632-5888 or 704-451-4144 (cell)


Posted: 7:09 p.m. Friday (August 3, 2012) Updated: 12:11 a.m. yesterday

Patients, advocates wary as NC again reforms mental health system

By MARK BINKER, WRAL.com Multimedia Reporter


Raleigh, N.C. — North Carolina is in the midst of an effort to remake the state's public safety net for those with mental health, substance abuse and developmental disabilities.

Lawmakers, administrators and taxpayers want to see if the change to a "managed care" model can really save millions of dollars and avoid the over-spending debacles that marked the first system remake a decade ago.

At stake is how the North Carolina manages more than $2.4 billion in state and federal mental health dollars that flow through local mental health agencies, and how individuals with mental illness will live their lives every day.

"All I want to do is keep my daughter at home," said Laurie Haley.

For her, reforms success or failure will be measured by how it affects her daughter, Alissa. The 27-year-old woman has severe developmental disabilities and also suffers from seizures. Alissa needs help dressing, eating and taking care of other needs. Those who help her need to be able to administer medicine and prepared to act in case a seizure makes her fall in the shower or comes on her in public.

Haley says that she has, for now, ensured that the transition to managed care won't mean fewer services for her daughter. But she said other families making the switch are still encountering problems.

"What I'm hearing is that they're still trying to reduce services for people," Haley said.

That small-scale skepticism of the new system was amplified this summer when a blistering report said that one of the first local mental health authorities given permission to make the transition was not ready for the switch to managed care.

State and local mental health administrators say that one experience should not color the entire transition effort and that the system is on the road to improvement. Advocates, some who work providing services to clients and even some lawmakers say the process may be moving too fast. They worry that counties such as Wake and Durham, which have just begun the move toward managed care, could encounter the same mistakes and problems seen elsewhere.

...

[ There's much more... Read the Full Story on WRAL.com ]

And while statewide success will be measured in millions of dollars, Haley and others like her will measure it in terms of what it means for their loved ones.

"My daughter is not a disability, she's a human being with a disability," Haley said. "If I have the right to live at home and you have the right to live at home, she should too."

----------- more from Mary Short...

EXTRA:  Mercer Report link
2ND EXTRA:  Federal Report link and quote from that report

C. Health, Safety and Quality

Abuse, neglect, exploitation, the use of mechanical and chemical restraints, unexplained injuries and denial of services are far too prevalent in our current long-term system of services. CMS has made significant strides in holding states accountable for addressing health and safety issues in the 1915(c) Medicaid Home and Community Based Waiver program; but requirements governing program design, state monitoring and reporting to CMS have not been mandated for managed care programs approved under Section 1115 demonstration waivers or under the dual eligible pilot demonstrations.
3rd EXTRA:  Other news reports from Raleigh sources regarding other budget cuts and budget overruns

http://projects.newsobserver.com/under_the_dome/mental_health_office_needs_lots_of_work_consultant_says#storylink=cpy
Submitted  by lbonner on 2012-07-26 14:37
Under the Dome | mental health | N.C.  Department of Health and
Human Services | Western Highlands  Network

Last week, we wrote about a local mental health office that  covers
western North Carolina counties losing $3 million since switching  to
managed care in January.

A consultant's report issued this week  describes problems at Western
Highlands Network, one of the first local  mental heath offices to
convert to a managed care system.

Among other  things, the report says that the information Western
Highlands leaders  receive about services, use and costs is inadequate,
and that it is not  keeping good track of Medicaid claims.

The report goes on for nine pages.  In short, it says Western Highlands
needs lots of improvements, and the  consultant recommends close
monitoring by the state Department of Health and  Human Services.

Under managed care, the local mental health office gets a  set amount
of money to treat mentally ill patients who rely on Medicaid or  state
funds.

Western Highlands Network became a managed care  organization in
January. By next January, managed care organizations  for
government-paid mental health services will cover the entire  state.
And ... news article re WHN & Mercer Report is in it and easy to read!