What's New in October

October 2012 news, events, and updates.

• An Open Letter to Ann Coulter and then some...
• CAP I/DD... this is NOT NC Innovations, from Parent Advocate Mary K. Short.
• Federal Medicaid Block Grants and the Impact to I/DD Populations and Families from The Arc of the United States.
• Voting Information for Adults with Disabilities - Make Your Voice Heard, from The Arc of North Carolina.
• Crisis in Personal Care Services in NC, and How to Address It from The Arc of North Carolina.
• NCGA JLOC on HHS Meeting Notice for 10/16.
• added to Google Events Calendar.
• A Day in the Life... [personal note]

[ What's New Main ]

Trick or Treat? ....That is the Question...

Hi, All!

I know, to paraphrase Shakespeare in this post's title in such a common way seems unfair, but this past month of playing “Whack-a-Mole” between understanding ‘what is meant’ and ‘what is’ has been a confusing adventure… and I know I am not alone.  Since my daughter’s birthday is coming soon and I am in an area that is not yet under NC Innovations, I was thrown into the usual yearly planning frenzy in a gear that I try to rarely pull out… 

Yes, we are talking the gear of 2^nd-3^rd Overdrive…;)!!  I wasn’t even sure I had that in me anymore to be honest… and leaving me with the definite knowledge that at some not too distant future point I will for sure sputter out.

My arms flailing as I turn page after page of info, fingers tapping on the keyboard hunting latest answers… hoping I have addressed all the foreseeable concerns to make it through the transition and beyond… and bless my daughter’s team, they hung in there with me… altogether we worked for that one wonderful, elusive main goal… yes, irony to be sure, as all that kinetic energy poured into helping my daughter be as stable and to have as much potential energy as possible during the transition and hopefully beyond… for her to be able to navigate as best she can so she can continue work towards her life goals.  

I wonder how many of you out there feel similarly… we work so hard to scan the horizon, plan long-term, put appropriate goals into place, support the team effort to pull together, follow-up with needed pieces that multiply by the hour, phone calls, emails, be the 24/7 back-up, ever the while the long-term becomes more and more short-term, etc… all to help our loved ones & others have lives in the community with opportunity to develop friendships, support the causes important to them in their own ways, work on their own life goals, and yes, even to dream, to take reasonable risks, to achieve, to fail, to learn, to grow, to build that elusive something special even… resilience, community bonds of true interdependence, etc.  Okay, so I dream, too… and I know I am not alone in that either…;).  Without that vision of opportunity to work towards, how will we know how far we as a society can go?

So, with that said, my travels this past month have highlighted a similar “Whack-a-Mole” pathway tumbled with the importance of the election.  I followed the trail of various statements by those aspiring for our votes and sharing his/her vision of what NC could be… and the state and others sharing ‘what we believe in’ for the NC System of Care for people with disabilities, which truly ring of heart toward greater purposes… these belief statements that I do feel oftentimes are heartfelt and reflect what ‘we want to be.’

 

Of course, what we see on the ground is where our great visions have failed along “implementation way.”  This leaves us in the land of “reality check” and represents ‘what we actually are.’  In the recent national UCP ranking for Medicaid services for people with intellectual/developmental disabilities reveals, NC ranked 44^th, meaning only 7 states rank worse than NC in helping people with intellectual / developmental disabilities to be included in community living.  (Note: my math is not off…they included the District of Columbia as a separate area making the total of 50 states and DC = 51…for the quick list & full report link go to:  www.disabilityscoop.com/2012-state-medicaid-rankings/ )

How does this happen?  Great intentions, wanting to believe the best in ourselves, mixed with practicalities of program needs, staffing issues, clinical oversights, liabilities, funding, and throw in one of the biggest wild cards of all… politics.  Decision-makers, at the stroke of a pen, can cause havoc through unintended consequences or worse, with intent, in an overly complicated system. 

Now, what is the requirement of such important decision-makers, you ask?  Certainly, they must be well-versed in understanding people with disabilities, their needs, their lives, especially the roughly 2% who have intellectual / developmental disabilities to the extent that they are solely dependent on the state to receive services, surely EVERYONE knows they are served first at the table, we would NEVER leave them out, etc… No?!.  Then, it comes as such a shock when reality hits and waiting lists, penetration rates, and other such indicators are revealed, and we are faced with the hard, sad truth that what we want to be is not what is.

  

When the only true requirement of these decision-makers is popularity from the masses, it stands to reason our issues will continue.  It is hoped by many that popularity represents the confidence of the people in the elected person that she/he can and will do a good job overall for every voter need in NC during her/his term of office…. And generally, this elected person wants to earn your vote again in the next term… so exactly how are our most vulnerable population with long-term needs represented in this short-term-minded machine on either side of the aisle?

 

So, as they say, to change is easy, but to improve is hard…  

To truly improve system of care in NC, improvements not only come from within the system but also have to come from those outside the world of disability… from our public, our politicians… elected officials charged with the care of our collective population… they become the top decision-makers in our state as elected by we, the people of the state, through our votes.  When they make recommendations, they should also have to look in the mirror to see if they are holding true to the values they want to uphold in their own recommendations to others, meaning they should be sure to include and genuinely listen/heed the advice of the same cross-section of expertise they know is needed when making decisions affecting people with disabilities in the state at the more local management levels. 

And improvements need to come from we, the people of our state, who need to hold accountable our decision-makers by being informed, voting, and participating as fully as we can.  Are we going to go for the funniest ad, the most popular opinion, the best looking, the this, the that… or are we going to get to the soul & heart of what needs to be done for long-term success, and can we make that the real conversation that holds overall attention for longer than 8 seconds, the new average attention span time of Americans online? (ref:  http://www.statisticbrain.com/attention-span-statistics/)

In summary, I put these thoughts out there during this election season and on Trick or Treat day in hopes of making tomorrow better.  As we cast our ballots for our champions at the decision-making tables of our nation, our state, & our communities, I suggest we might ask three questions not only of those seeking our vote but also of ourselves:

 

1.      Who will demonstrate ‘level of care’ by actively doing their best to participate and help others participate in finding quality solutions?

2.     Who will be present at the table when input is needed and key decisions are being made?, and

3.     Who will follow our state motto, ‘to be rather than to seem’ on key issues to move us forward from where we are?

Treat (to be) or Trick (to seem/not to be), now that is the question… and one I will be pondering as I cast my vote and as I look in the mirror working to become the person I always want to be...

Anna…

p.s.  also, thinking of friends, family, all those near and far, who are dealing with the effects of Hurricane Sandy during this difficult time... 

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.

-----------

From The World of Special Olympics

An Open Letter to Ann Coulter

Posted on October 23, 2012 by Tim Shriver

[ view original posting ]

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:

http://www.ncdhhs.gov/dma/bulletin/pdfbulletin/1012_Special%20Bulletin_IDD_Waiver.pdf

CLINICAL POLICY 8M:

http://www.ncdhhs.gov/dma/mp/index.htm 

(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!)

Breaking: Governor Moves $20 Million to Pre-K, PCS Crisis Remains | Intellectual & Developmental Disability Support | The Arc of NC

Breaking: Governor Moves $20 Million to Pre-K, PCS Crisis Remains | Intellectual & Developmental Disability Support | The Arc of NC

Medicaid Block Grant & Impact on IDD Populations

From The Arc of the United States

Medicaid Block Grant Information

How will Medicaid Block Grants Impact People with Intellectual and Developmental Disabilities and their Families?

[ original post on thearc.org ] 

Introduction

The House Budget Resolution for FY 2013 calls for drastic cuts to Medicaid ($810 billion over 10 years) that would fundamentally reshape the program—making it less reliable for the people who depend on it and shifting costs to consumers and to the states.

For millions of people living in poverty, Medicaid is a safety net. For many of the 7 million people with intellectual and developmental disabilities (I/DD), Medicaid is a life line. People with I/DD typically require more complex and costly services than Medicaid recipients without disabilities. Frequently, they need care from several different types of health care providers and they often need the services throughout their lifetimes.

What is a Medicaid “block grant?”

A Medicaid block grant would be a fixed amount of money from the federal government to the states to spend on health care for people who are poor, elderly, or have disabilities with only general rules and very little oversight about the way it is spent.

Based on previous federal block grants and the general statements that House Budget Committee Chairman Paul Ryan has made about the FY 2013 House Budget Resolution, we expect that a Medicaid block grant would:

• cap the amount the federal government spends on Medicaid.
• NOT increase this amount to keep up with health care inflation.
• radically cut the federal share of Medicaid.

Why do some Members of Congress want to block grant Medicaid?

All health care spending is growing. Experts claim that it will continue to grow and become an ever larger share of our federal budget. Most Members of Congress are looking for ways to get our fiscal house in order. Some Members of Congress are focusing on the growth of federal spending in the Medicaid program. They believe that block granting Medicaid will save federal dollars. Under a block grant, federal funding for Medicaid would not grow when more people need health services. The challenge of providing health care without any additional federal money to people who are poor, elderly or have disabilities would fall to the states.

What are the most critical Medicaid services for people with I/DD and how does Medicaid pay for them?

The most critical Medicaid services for people with I/DD are:

• Acute care - including hospital care, physician services, and laboratory and x-ray services. These acute care services are mandatory which means they must be provided to everyone who is eligible. States have the option to offer (and most do) prescription drugs, dental, physical therapy, speech therapy, prosthetic devices and other services.
• Long term services and supports - including help getting dressed, taking medication, preparing meals, managing money, getting in and out of bed.

Medicaid is a shared program between states and the federal government and each pays for part of it. The federal share of Medicaid ranges from 50% to 75% of costs. As the need for Medicaid grows in the states, the federal government spends more.

Is Medicaid an entitlement program?

Yes. This means that if a person meets the eligibility requirements (generally poverty, age and/or disability), he or she is entitled to the services available under the state Medicaid program.

What are people with disabilities currently entitled to in the Medicaid program?

Today, each state’s Medicaid program is required by the federal government to provide a minimum level of coverage for the elderly, people with disabilities, and low-income adults and children in order to receive federal matching payments. Minimum services include seeing a doctor, getting x-rays, going to the hospital, receiving care in a nursing home and vaccines for children. Nursing home care is also an entitlement and Medicaid pays for almost half of the long-term care expenditures in this country. It is the primary payer of long-term services and supports for people with I/DD.

What might states do if Medicaid is block granted?

Block grants could force bad choices and cause substantial conflict as groups with diverse needs compete for scarce dollars. Since the services to people with disabilities and the elderly are significantly more costly than health care coverage for children, states could decide to serve fewer costly adults and people with disabilities and focus scarce health care dollars on less costly children. However there is no certain way to know what states will do. Below are possible choices states might make:

• States may reduce coverage of home and community-based services (HCBS) and supports. Most people who need long term services prefer to receive them at home. Over 650,000 people with I/DD receive long-term services paid for by Medicaid. States could decide to stop providing these services or limit the number of people who could get them. There already are over 300,000 people with I/DD on waiting lists for Medicaid home and community-based services. There are 730,000 people with I/DD living with aging caregivers who are approaching the time when they no longer will be able to care for their adult children with I/DD at home. If states stopped providing long-term services for people with I/DD, the waiting lists would grow and the situation for older caregivers would become more dire.
• States may decide to move people into institutions. Under a block grant, rules for providing quality care could be more flexible and conditions in institutions could return to the way they were in the past. With fewer requirements, it may be cheaper for states to care for people with I/DD in large facilities.
• States may reduce eligibility by making it more difficult to meet financial or other criteria. To be eligible for Medicaid, people have to be poor. States could restrict health care services to only the very, very poor.
• States may increase the cost burden on the individuals or family members. States may decide that families should take care of their family members who are elderly, ill or have disabilities. States might decide that sons and daughters should care for their parents when they become frail or ill without any public dollars. In order to get health care, people might have to pay more out of their own pockets. Since people on Medicaid are poor to start with, requiring them to pay for their medical care or long term services and supports could be an insurmountable barrier.
• States may eliminate or reduce the availability of critical services such as personal care, prescription drugs, rehabilitative services, or home and community based waiver programs. All of these services are “optional” under Medicaid meaning that states may choose to provide them under their Medicaid plans or not. If funds become scarcer, states may decide to stop providing these optional services.
• States may slash the amounts they pay to doctors and other providers. It is already very difficult for people using Medicaid to find doctors and other health care providers. Finding a dentist or a specialist, such as a neurologist, is impossible in some communities. If states cut the amount they pay doctors and other providers, those professionals may quit serving people under Medicaid making the problem even worse.

If people with disabilities lose their entitlement to Medicaid, couldn’t they just purchase private insurance instead?

No. Most people with I/DD cannot get medical insurance through an employer because they do not work full time. In fact only 21% of people with all disabilities are working (March 2011). Others cannot find health insurers who will sell them policies because of their pre-existing conditions. Many people with I/DD cannot afford health insurance. Some people with I/DD find that if insurers will sell them policies it does not cover the services they need or the coverage is exorbitantly expensive.

Why are we concerned that services to people with disabilities might be targeted in the states if Medicaid is turned into a block grant?

People with disabilities and the elderly account for most of the Medicaid spending. While children and parents make up about 75 percent of Medicaid enrollees, they account for less than a third of the spending. In contrast, the elderly and individuals with disabilities make up about 25 percent of enrollees but about two-thirds of spending. Medicaid spending per capita in 2009 was $3,442 for families (parents and children) and more than five times higher for the elderly and people with disabilities at $17,763. The elderly and people with disabilities use health care services more often and use more health services and the elderly and people with disabilities are more likely to use long-term services and supports. We are very concerned that states may slash the supports that help people with I/DD live independent, productive lives.

Are block grants cost effective?

A Medicaid block grant doesn’t control the cost of health care which continues to rise as people get older and use more health care services and as the general cost of all health care increases. They do shift more of the cost to that state and likely the individual. Costs may actually rise significantly because people who lose their health care or can’t afford it will stop seeing their doctors or taking their medication. When that happens it makes existing health conditions worse leading to more doctor or hospital visits and more costs down the road and the individual faces more illness and hardship. If home and community based services are reduced it will likely lead to greater levels of costly and unnecessary institutionalization or homelessness. If people are not provided needed services they may not be able to work, learn or function in the community. This creates lost productivity from the individual and family members if they are called upon to provide care when there are no other options.

What can advocates do?

Advocates must make clear to their Members of Congress that block granting Medicaid is not the answer to our nation’s deficit. Advocates must tell their Members what exactly is at stake. The health of people with I/DD may very well be at stake if it becomes more difficult or costly to access needed health services. What will happen if you or your family member loses services under Medicaid or if you have to pay for long term services and supports? Advocates must let their Members know what the biggest concerns are for individuals and families with I/DD if state Medicaid programs are turned into block grants. With less money, would states make it more difficult to become eligible for Medicaid?

• Would they cut benefits?
• Would they cut current levels of spending?
• Would they decide not to cover currently eligible populations?
• Would the states stop serving certain groups of people?
• Would they stop providing entire categories of services?
• Would people with I/DD be able to obtain health care?
• Would people with I/DD have long term services in community settings or would they be forced into institutions?

We must make our voices heard. We all understand that sacrifices will need to be made to address our nation’s money problems. Advocates need to help Congress understand that solving these problems is going to take a common sense, balanced approach. We cannot solve our problems only by focusing on the poor, the elderly, and people with disabilities.

[1] Center on Budget and Policy Priorities Rhode Island’s Global Waiver not a Model for How States Would fare under a Medicaid Block Grant, March 2011. Rhode Island’s block grant is held up as a model by some supporters of block grants. However, the state’s fixed amount of federal funds was greater than their normal federal share of Medicaid dollars. Rhode Island’s program does not reflect what likely would happen under block grant proposals currently being discussed. There also is disagreement about the state’s claims of savings under its block grant.

It's Time to Make Your Voice Heard - Time to Vote!

From The Arc of North Carolina

It's Time to Make Your Voice Heard - Time to Vote!

[ original post ] 

Election Day is November 6th. But there’s another deadline you need to double check: October 12th is the last day for general voter registration. Are you registered? How about your friends and family members 18 years or older? Have you moved since the last election? Now’s the time to double check and make sure your vote counts.

In 2008, only 55% of people with disabilities voted in North Carolina, compared to 69% of people without disabilities. That means there was a 14% voting gap between voters with disabilities and voters without. Your biggest tool to affect positive change for the disability community is your vote. Make sure it counts!

Not sure if you can vote? Not sure if you’re registered? Not sure if you’re allowed to help someone at the polling station? Below you'll find information and resources you can use.

---

Disability Rights North Carolina has put together any number of tools you can use. Click here for a 2-page brochure that explains how to register, different ways to vote, and what to expect when you get there. Taking someone to the polls and want to support them while you’re there? Click here for information family, friends and poll workers can use.

Remember, you may register to vote if:

• You are a citizen of NC
• You have lived in the county/precinct where you want to vote for at least 30 days
• You will be 18 years or older on November 6, 2012
• You have not been convicted of a felony. (If you have been convicted, you’re eligible to vote as soon as you’ve completed all the terms of your sentence.
• You have not had the right to vote specifically taken away in any proceeding
• Most people with guardians keep the right to vote.

Even if someone challenges your right to vote, the law says the poll worker must allow you to vote on a provisional ballot. Don’t leave without casting your vote!

Click here to go to the NC Board of Elections website for more information on general voter registration, to double check your registration, and more.

Crisis in PCS in NC, & How to Address It

From The Arc of North Carolina

Crisis in Personal Care Services in NC, and How to Address It

[ original post ]

Issue:

For thousands of North Carolina citizens with intellectual and developmental disabilities (I/DD), as well as people with mental illness, the Medicaid State plan service "Personal Care" (or PCS) has provided supplemental funding for housing supports in small licensed group homes.

Earlier this year, the General Assembly raised the level of disability needed to receive PCS. Now, individuals must require assistance with three activities of daily living [ADL’s]. This rule applies to both in-home and facility based services, to achieve legally required comparability. Unfortunately, most individuals living in licensed group homes will no longer qualify.

This change could reduce a group home’s budget by up to 30%, creating significant budget shortfalls- yet another hardship for an already struggling community-based option.

Not only does this reduction affect the provider’s ability to provide basic support services, in many cases it could lead to an inability to meet the group home’s debt obligations. Many of these homes were financed using US Dept. of Housing & Urban Development (HUD) funding streams, and a significant number are tied together through HUD approved refinancing methods. If vacancy rates rise due to lack of support services, well over 250 properties could be at risk of failing.

Recommendations:

For most people living in these types of homes, PCS was not their most needed service. Individuals living in these settings most often need support services to allow them to live successfully in communities. For people with I/DD, they are most likely support services that are habilitative and for people with mental illness they would be recovery based support services.

For both populations there are Medicaid options that, if designed correctly, could support people in these settings and other community based options that should not increase the state funds needed to provide these supports. Unfortunately, it is impossible to get these new service definitions designed and approved by the Center for Medicaid Services by December 31- the end date of the current PCS definition.

With this in mind, we would recommend the following course of action.

1. Extend the state funds available to people living in Adult Care Homes to licensed group homes. Thirty-nine million dollars is already set aside for adult care homes during this period of transition. This reserve should be extended to licensed group homes as well. People living in licensed group homes often have more significant disabilities than the individuals in adult care homes and deserve the same protection provided by the funds appropriated for adult care home residents.
2. For people with IDD- Immediately begin the work of creating a specific 1915i option for services[s] that would support individuals living in community settings- both licensed and non-licensed. The 1915i option is a near perfect fit for this type of service. Not only can it provide funding to offset the loss of PCS, it could be designed to offset the state services dollars that are used in group homes and provide another meaningful Medicaid service for people living in other community settings. The match money for these services could come from already appropriated community base state funds. Preliminary estimates by The Arc indicate that a carefully crafted 1915i option could support individuals in these homes and make a significant dent in the waiting list without any additional appropriations from the State.
3. For people with Mental Illness– It is possible that the same type of 1915i option services may make sense for people with Mental Illness. It may be more difficult to craft services definitions that assure cost neutrality, but this option should be explored immediately.

At the same time, the state should review the possibility of creating a recovery-based support service under Medicaid that could be used in non-licensed community settings as well as licensed settings. Since Mental Health services are recovery based, such a service could be created without the use of a 1915i. In both cases, 1915i or state plan service funds already used for community services for people with mental illness could be used for match.

These recommendations are straightforward solutions to what will become a significant crisis if we do not act. While there may be other options, we suggest the above actions because they have to potential to solve the problem short term and create a low cost solution for the long term that is consistent with best practice. If we are able to follow this path we not only stabilize the licensed community based options but create good options for individuals who choose to live in less restrictive settings.

NCGA 10/16 HHS-JLOC Meeting Notice

NORTH CAROLINA GENERAL ASSEMBLY

Raleigh, North Carolina 27601

October 5, 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 October 16, 2012
TIME 10:00 am - 3:00 pm
ROOM 643

If you are unable to attend or have any questions concerning this meeting, please contact Candace Slate at (919) 715-0795, Dina Long (919) 733-5908, or Joey Stansbury (919) 733-7659.

cc: Committee Record _X_
Interested Parties _X_

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.