NC House Bill 916 is NOT the Answer!

06 September 2012

Parent Correspondence re CAP MRDD transition

Fwd: Waiver Update: CAP-MR/DD to IDD

MaryKShort@aol.com <MaryKShort@aol.com>

Tue, Sep 4, 2012 at 7:37 PM

To: MaryKShort@aol.com

This is about the CAP-MR/DD to IDD transition ... not NC Innovations or MCO's! It looks like the change to the IDD waiver (and the 40 hour rule) will happen on Sept. 28th for those of you still on the CAP waiver. Remember: You have a right to request a reasonable accommodation or an exception to the 40 hour policy under the ADA (American with Disabilities Act.) You simply request the ADA exception with the reason WHY you need the exception. You also have a right to request an ADA reasonable accommodation or an exception to the SNAP/SIS score guideline/limit on the amount of services that are "medically necessary for health and safety." Katie SNAP's at a Level 3 and received Level 5 Home Supports, exception was granted for her medically necessary for health and safety level of services. You can request an ADA accommodation to any rule, policy, procedure or whatever. Only you know what it is that will truly meet the "medically necessary for health and safety" level of services.

For those of you who switched to the IDD services way back when (November?) and who have been working more than 40 hours BECAUSE the state was not enforcing the limit because the waiver was not CMS approved ... It is my guess that you will now be required to come into compliance or request the ADA accommodation.

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

From: Connie.Martin@cms.hhs.gov
To: MaryKShort@aol.com
Sent: 9/4/2012 10:43:26 A.M. Eastern Daylight Time
Subj: RE: Waiver Update: CAP-MR/DD to IDD

Good morning, Ms. Short,

Ms. Johnson left DMA a couple of months ago to take another position in the community according to the outgoing voice mail on her old telephone number. At the end of June, CMS granted the NC DMA another extension to run until September 27^th, 2012, so there have been no gaps in coverage. CMS has recommended approval of the waiver renewal and it is going through the sign off process now.

Thank you,

Connie

From: MaryKShort@aol.com [mailto:MaryKShort@aol.com]
Sent: Sunday, September 02, 2012 7:26 PM
To: Martin, Connie L. (CMS/SC)
Subject: Waiver Update: CAP-MR/DD to IDD

Hello Connie. I wrote to NC DMA (Susan Johnson, below) asking about the CAP-IDD waiver and have not heard back. A number of families have asked me I knew for SURE that the CAP-MR/DD to CAP-IDD waiver had been approved by CMS or if there was an extension. In fact, DMA's web site only officially lists the extension to the end of June! That would imply there is no CAP-MR/DD or IDD waiver. Please let me know where it stands. Thank you.

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

From: MaryKShort@aol.com
To: susan.e.johnson@dhhs.nc.gov
Sent: 8/30/2012 1:47:23 P.M. Eastern Daylight Time
Subj: CAP-MR/DD to IDD

Is the MR/DD going to IDD on October 1st or not? I can't find anything in a Medicaid bulletin or Update ... I only see IU #92 that said until 6/29/12. What's up?

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

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. ;-)

More about Anna...

31 August 2012

What's New in August

August 2012 news, events, and updates.

Added to Google Calendar of Events.

added to Google Calendar of Events

Panel Discussion re: impact of PCS & IMD laws on Housing for People w/ Mental Illness, 8/27.

added to Google Calendar of Events

Family Advocacy Network Stewards of Children Workshop 9/8.

added to Google Calendar of Events

[ What's New Main ]

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

From The Arc of North Carolina

Crisis for those Receiving Personal Care Services

[ view at ArcNC.org ]

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.

NCGA JLOC-HHS Meeting Notice 9/11

NORTH CAROLINA GENERAL ASSEMBLY

Raleigh, North Carolina 27601

August 27, 2012

MEMORANDUM

TO: Members, Joint Legislative Oversight Committee-Health and Human Services

FROM: Senator Louis Pate, Co-Chair
Representative Justin Burr, Co-Chair
Representative Nelson Dollar, Co-Chair

SUBJECT: Meeting Notice

DAY: Tuesday
DATE: September 11, 2012
TIME: 10:00 am - 3:00 pm
ROOM: 643

NOTE: For scheduling purposes future meetings dates are as follows:

October 9, 2012
November 13, 2012
December 11, 2012
January 8, 2013

If you are unable to attend or have any questions concerning this meeting, please contact Rennie Hobby at 733-5639 or mentalhealthca@ncleg.net.

cc: Committee Record _X_
Interested Parties _X_

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. =)