Showing posts with label CAP I/DD. Show all posts
Showing posts with label CAP I/DD. Show all posts

04 June 2013

The Lost Art of LISTENING.

Before I launch into what will probably be my last post (though don't hold me to it), I want to introduce you to Raleigh Attorney Knicole C. Emanuel with Williams Mullen and her most excellently well written and legally sound Medicaid law blog. In my humble opinion, anyone who can so eloquently and factually draw a strong comparison and contrast between Shakespeare's "MidSummer's Night Dream" and the Medicaid providers' prepayment nightmare is nothing short of a poetic knight in shining armor (yes, chicks can be knights too - why not?)

Now, on with the show...

So, people keep asking where I've gone? Commenting that they've not heard much from me lately... Well, the truth is, that while I have been known to talk to myself on occation, there are some conversations that really need a active partner for successful dialogue. 

Frankly, I'm all talked out at the moment.

American author and journalist, Ernest Hemmingway was quoted as saying, "I like to listen. I have learned a great deal from listening carefully. Most people never listen."

Stephen R. Covey, author of The 7 Habits of Highly Effective People: Lessons in Personal Change said, "Most people do not listen with the intent to understand; they listen with the intent to reply.” 

Therein lies the problem. Nobody's listening.

Everyone has something to say in this Medicaid quagmire - the MCO's and LME's have plenty to say, providers have even more to say, DHHS and DMA have their say, facilities and group homes have something to say, advocacy groups keep trying to have their say, consultants and lobbyists get paid the big bucks to keep saying stuff, and members of the North Carolina General Assembly always seem to have the final say... and don't even get me started on the recipients and their family members that most everyone seems to conveniently forget in all this. 

Nobody can keep the stories straight, not even (and often, especially) the media, becasue it appears the right hand doesn't know what the left hand is doing while everybody's busy with their own personal diatribes and ass-saving.

Everybody's talking but nobody's listening.

Nevermind all of the asinine bureaucratic dynamics at play in the dirty politics of the NC Medicaid system - the inappropriate friendships, roles, relationships, mothers / daughters / board members, ethical conflicts of interest, and who's scratching who's back. Yep, we know about all that.

There are way too many egos on the line here (not to mention the obscene amount of money invested), meanwhile we continue to rearrange the deck chairs on the Titanic while ignoring the real issues of human concious. That's right, I said it again.

I find that this is especially true of the current political climate in North Carolina... For the first time in just over 100 years, the Republican party has finally won back the driver's seat and they seem to be hell-bent on making up for lost time with issues far more "important" than the welfare of our state's most vulnerable citizens, with such utter nonsense as nipples, fracking, abortion / right to choose, ending size limits for K-3 public school classrooms, teaching about abortion risks in public schools while lifting smoking bans on college campuses, imposing rediculous voting restrictions and flat out denying many the right to vote, slashing unemployment benefits, requiring a 2 year waiting period prior to divorce (ironically dubbed the Healthy Marriage Act), vain attempts to negate the first amendment with a state religion, and arresting peaceful protestors, among other idiocy. 

Handbasket anyone?

What with all that debauchery going on, who has time to worry about the threat of homelessness to residents of NC group home facilities (yet again)? Or whether developmentally delayed recipients and their tired-ass exhausted families have the resources to make it through yet another day, or even if they do - if they are actually receiving the services they are entitled through all this slimey red tape? 

I mean really? Who cares? We're such a small minority of the State's population when compared with the number of citizens who have nipples, for Christ's sake.

And speaking of Christ... Conservative politicians love to use the Bible as a platform and foundation for their arguments and justifications and while I've been known to agree with certain positions, it should be noted that countless infamous American psychopaths (Charles Manson, Jim Jones, Fred Phelps, etc.) have also used the good book as sources of inspiration and justification... just sayin'.

My Christ is not wrathful nor boastful, not judgmental nor unknind, and is not dis-compassionate nor cruel toward fellow man nor the world we live in. In the documented lifetime of Jesus, he exhibited love and compassion to all, even those who sought to destroy him and especially for those who could not do for themselves. 

I believe Christ to be alive in the very essence of our collective being, our hearts if you will, a state of mind we all should strive toward. --A perpetual state of love and forgiveness... a state of grace and joy I witness every single day in my own special daughter, Isabel, and her special peers. 

Where the hell are our priorities?

It's way past time for the North Carolina "powers that be" to start listening more to the people, their constituents and voting public, who must live with, and at times suffer from, the repercussions of their actions and decisions. 

You do NOT know what is best for me and mine; that, I can guarantee you. And I'm certainly not in the minority there.

Perhaps if everyone suddenly, miraculously began to listen more, really listen, and made an honest attempt at understanding one another, as I believe the late Steve Jordan had hoped, we wouldn't require knights in shining armor to mitigate such a shameful Comedy of Errors... though sadly, nothing seems to grab attention these days (and further waste taxpayer dollars) quite like a good ole American law suit, eh?

Hang in there folks.

28 February 2013

What's New in January & February?


January and February 2013 news, events, and updates.

February
January

21 February 2013

Insult to Injury: Expungement?

Re: Talk about insult to injury?!! Fwd: [lme_providers] Expunction of Criminal Records in North Carolina
From: Crystal J. De la Cruz
Thu, Feb 21, 2013 at 1:35 PM


Dear Families, People of Conscience, Senators and House Members, and Federal Representatives,

Pardon my French, but seriously, WHAT THE HELL?

Please see below an listserv I received today in which Eastpointe MCO's CEO, Karen Salaki, offers up to her colleagues and underlings a helpful reference guide to Expunction of Criminal Records in North Carolina presumably for MHDDSA professionals and staff... which, in my humble opinion, is not only completely inappropriate for this field, but begs to question:

  1. Is criminal activity really such a problem for employees in North Carolina's field of Health and Human Services that it warrants dissemination of this information to the entire NC Local Management Providers listserv?
  2. And this problem, is it a global epidemic throughout the entire I/DD field or is it isolated to say, direct care staff who work with clients who can neither defend themselves and, in most cases, communicate their needs or fears?
  3. Is there such a shortage of decent, trustworthy, qualified applicants that we gotta break the levy in order to widen the pool because it's near impossible to find direct care staff willing and able to work for what pitiful portion of funds are left after the hierarchy trickle-down?
  4. Would you knowingly allow a convicted felon (even a non-violent one?) access to your home and more importantly, to babysit your children? How about a someone with just a little ole Class 2 Misdemeanor charge (in NC, charges of Simple Assault and Shoplifting are both Class 2 Misdemeanors, while Speeding is a Class 1) And would you allow this same individual to care for your elderly mother with dementia?
  5. When are we as a society, as a state, as a community - going to STOP subscribing to this unwritten American caste system of human value?

I really hope this is a misunderstanding, however, given the trends of this entire Medicaid process, it feels more par for the course.

We, the parents and family members, are still waiting to be heard and taken seriously regarding our experiences, knowledge, expertise, fears, concerns, and stuff like this that we're simply shocked and appalled about. Gosh, there's really no end to all we could accomplish if we all chose to work together... Just sayin'.

Thank you in advance for you time and attention. As always, please do not hesitate to contact me at any time.


Kind regards,
--
Crystal J. De la Cruz - Hopper
Mother, Advocate & Concerned Citizen

When we allow the value of human life to be determined by capital gain, when we sacrifice the well-being of the most innocent among us to compensate our own shortcomings, and when we judge the worth of our most fragile, not by their character nor intention, but rather their abilities – We Are in Crisis.

http://no2nchb916.blogspot.com/

"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."
--Hubert H. Humphrey


----- Forwarded Message
From: Listserve Administration
Reply-To: Listserve Administration
Date: Tue, 19 Feb 2013 16:53:33 -0500
To: NC Local Management Providers
Subject: [lme_providers] Expunction of Criminal Records in North Carolina

To: Provider Network
From: Karen Salacki, Chief of External Operations
Re: Expunction of Criminal Records in North Carolina

Attached is a very helpful guide on how to have eligible offenses removed from criminal records. Please share with applicable staff within your agencies.


This e-mail is for informative purposes ONLY.

Please do not reply to this e-mail.

---

You are currently subscribed to lme_providers as: janet.presson@asmallmiracleinc.com.


To unsubscribe click here: http://lists.unc.edu/u?id=53091867.3571bb40e36a7e70f1361fb08a87d445&n=T&l=lme_providers&o=32779787

(It may be necessary to cut and paste the above URL if the line is broken)

or send a blank email to leave-32779787-53091867.3571bb40e36a7e70f1361fb08a87d445@listserv.unc.edu

Public Records Law Statement:
Please be advised that any e-mail sent to and from this e-mail account is subject to the NC Public Records Law and may be disclosed to third parties.

Confidentiality Statement:
This e-mail transmission and any documents, files or previous e-mail messages attached to it may contain confidential health information, such documents are legally privileged. The authorized recipient of this information is prohibited from disclosing this information to any other party unless required to do so by law or regulation. Recipients are required to destroy such information after its stated need has been fulfilled. If you are not the intended recipient, you are hereby notified that any disclosure, copying, distribution, or action taken in reliance on the contents of these documents is strictly prohibited. If you have received this information in error, please notify the sender immediately and delete the e-mail and accompanying file attachment.

------ End of Forwarded Message


EXPUNCTION OF CRIMINAL RECORDS IN NORTH CAROLINA.PDF [460K]

08 January 2013

Special Medicaid Bulletin on b/c Waivers

Good Afternoon,

Please see the Special Medicaid Bulletin on the 1915 b/c waivers posted today. Please share with your stakeholders.

http://www.ncdhhs.gov/dma/bulletin/pdfbulletin/0113_1915bc_waiver_expansion.pdf

Thanks.

Kelly Crosbie, LCSW
Chief, Behavioral Health Section
Clinical Policy & Programs
Division of Medical Assistance
1985 Umstead Drive
2501 Mail Service Center
Raleigh, NC 27699-2501
(919) 855-4293
kelly.crosbie@dhhs.nc.gov

Email correspondence to and from this address is subject to the North Carolina Public Records Law and may be disclosed to third parties by an authorized State official. Unauthorized disclosure of juvenile, health, legally privileged, or otherwise confidential information, including confidential information relating to an ongoing State procurement effort, is prohibited by law. If you have received this e-mail in error, please notify the sender immediately and delete all records of this e-mail.

05 January 2013

New CAP I/DD Manual Posted

For those of you still on the CAP-I/DD waiver, the manual has been posted to DMA's web site.

Here is the link to the new CAP-I/DD MANUAL ... I copied page 35, Section 4.4 that talks about family member as provider. I put the bold on the word "recommended." It seems some of the LME's still on the CAP-I/DD waiver are telling families NO MORE THAN 40 HOURS at all. It is clearly "recommended" rather than absolute. Your provider agency needs to go to bat for you with the LME and needs to tell the LME they want you to work more than 40 hours.

Mary K. Short
828.632.5888 or 704.451.4144 (cell)

http://www.ncdhhs.gov/mhddsas/statspublications/Manuals/index.htm
CAP-MR/DD Waiver Manuals

CAP I/DD Comprehensive and Supports Waivers (Released 1/2/13)
Manual Revisions
Manual for 2008 Waiver Comprehensive Waiver (Released 7/21/10)
Manual for 2008 Supports Waiver (Released 7/21/10)

http://www.ncdhhs.gov/mhddsas/statspublications/Manuals/cap-manual1-2-13.pdf

4.4 Waiver Services Furnished by Family Members Natural supports are the personal relationships that occur in every day life that support people to participate more fully in their community and enhance their quality of life. Natural supports include informal and unpaid supports that are generally reciprocal in nature. Person centered planning promotes the concept that paid supports should supplement, but not replace, natural resources and supports available to the participant.

Waiver services cannot be provided to minor children (18 years or younger) by their legally responsible person (parents, adoptive parents or step parents) and / or other family members living inside the home. Waiver services may not be provided by the spouse of the participant. In addition, the legally responsible person cannot own or operate the provider agency that provides services to their minor child / step child / adopted child or spouse.

When parents, family members and / or guardians of the person are paid care providers, they must meet all of the following conditions:

1. They must be employed by a provider agency and meet the same requirements for employment as any other employee.

2. They must meet all required provider qualifications as identified in the service definition(s).

3. A parent or relative who lives in the natural home of the adult participant may only provide Personal Care and/or Home and Community Support services. It is recommended that no more than 40 hours of service per week be provided by a parent or relative who resides in the same home as the adult participant. Additional hours may be provided by a parent or a relative as appropriate, as long as health and safety can be ensured and isolation does not occur.

4. When parents, family members or guardians of the adult participant are paid care providers, there must be a clearly defined back up plan that specifies who will provide the care when the parent, family member or guardian is unable to do so.

5. When parents, family members or guardians of the adult participant are paid care providers, the PCP must outline measures that will ensure the participant’s choice and control over his or her daily life and ensures community integration. Targeted case managers will monitor for compliance, health and safety and evidence of possible social isolation.

01 December 2012

Weekly Update from Alliance BHC


Here is the link for this week's Alliance newsletter - http://www.alliancebhc.org/wp-content/uploads/November-30-2012.pdf

...and here are a few highlights to note:

1. Alliance Announces MCO Delay
Alliance has submitted a request to NC DHHS for a 30-day delay in its start date as a managed care organization responsible for the implementation of the Medicaid 1915 (b)/(c) waivers. The new start date will be February 1, 2013. To access a press release, click:  http://www.alliancebhc.org/news/alliance-announces-delay-in-managed-care-implementation

Cumberland and Johnston Timetable
Alliance will initiate management of IPRS and locally-funded services for Cumberland County on December 17. The start date for Johnston County has been shifted to January 1.

2.  NC Innovations Individual and Family Guide
The Alliance NC Innovations Individual and Family Guide 2013 is available in English and Spanish on the Alliance website. To access these and other NC Innovations information and resources, click:

3. Innovations Plus Community Forum
Alliance Behavioral Healthcare is working with the NC Department of Health and Human Services to improve the system of services offered to people with intellectual and other developmental disabilities who have CAP-I/DD now and will transition to the NC Innovations 1915(c) waiver in early 2013. The goal of this program is to create a fairer system and to ensure that people get the right amount of supports for their needs.

Thursday, December 13, 2012, 6:00-7:30pm
Alliance Corporate Office, 4600 Emperor Boulevard Room 105, Durham

To learn more about Innovations Plus, please join us at this meeting.  Alliance and DHHS staff will make presentations along with guest speakers from the Human Services Research Institute, which is assisting us with the program. For additional information, contact your I/DD Care Coordinator or Suzanne Goerger at (919) 651-8474.

4. ...and as always, check out the newsletter for calendar dates of Alliance CFAC meetings and are listed below for your convenience, too:

Alliance CFAC Meetings
    Alliance Corporate Office 4600 Emperor Boulevard Durham
    First Monday in February, April, June, August, October and December at 5:30pm

Alliance Durham CFAC Subcommittee Meetings
TROSA 1820 James Street Durham
First Monday in January, March, May, July, September and November at 5:30pm

Alliance Wake CFAC Subcommittee Meetings
401 E. Whitaker Mill Road Raleigh
Second Tuesday in January, March, May, July, September and November at 5:30pm

Hope to see you THIS Monday at Alliance CFAC meeting at 6400 Emperor Blvd in Durham at 5:30pm!

23 October 2012

CAP-IDD ... this is NOT NC Innovations

From Mary K. Short:


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

10 October 2012

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.

05 October 2012

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.

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 Services, Piedmont Behavioral Health, Sandhills Center, Saguaro 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 Universities, University of Georgia, Emory University, DC's American University, FHC Health Systems, Hospice of the Western Reserve in Ohio; Charleston, SC's New Hope Treatment Centers; HMS (a public government and managed-care contracting company); Deloitte, Marsh USA, and Alvarez & Marsal (each being US consulting / risk management firms with varying specialties); Nelson Mullins Riley & Scarborough LLP,  Drinker 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!

09 September 2012

Thoughts to Share...

Hi, All!

Those of you who already know me are aware that I am more comfortable in small group settings where information is being actively discussed verbally…  so this form of communication is a stretch for me… blogging.  I have had to learn to stretch much in my life as has many of you, too…  and each stretch has its time of pain and relief.  Pain in the act of learning how to do it and relief that perhaps I will not only live through it but actually find something of value to take away to help my family and others and hopefully personally grow into that person I always wanted to be when I grow up…;)!  Therefore, with that said, I will be sharing in this venue as though I am visiting with you all in a small group to encourage dialogue so we can all learn together!  One of the HUGE advantages I find in this venue is that whatever your schedule, you can access and be part of the conversation... 

Now, talking about VERY serious topics that affect lives so directly is vital to finding real world solutions; however, I have also learned from my middle daughter, Cassie, just how VITAL humor is to life, too…  so I am taking a life stretch lesson from her and hoping you all will allow me this license to suggest we create our own version of a traditional arcade-style game to help us work through our frustrations while we learn together as well… and just maybe a better real world solution will emerge… (Okay, I admit it freely, I have often been accused of being a dreamer…  but we all know, too, what is needed is also possible…if we work together throughout the system!)
So…
Have you ever played Whack-a-Mole? You know, the arcade-style game where a mole suddenly appears and you have a soft mallet that you hit it to score points… the game increases in speed as you progress through the levels until the moles appear so frequently and randomly you cannot predict where they will appear or react fast enough when they pop up…and then soon after, the GAME OVER sign appears… and your tickets earned spit out of the meter for you to go redeem at the prize counter and it usually takes a LOT of tickets to get the item you actually want when you get to the counter?  Yeah, that is the one I am talking about…;)!!


Traditional Whack-a-Mole Arcade Game

I mention this game because at first glance we feel we are caught in this type of arcade-style life where the holes in the ground are the various funding streams, service definitions, operational functions, etc and the moles are the various items that seemingly pop up all of a sudden and are all “urgent” in some way or another requiring our immediate attention, input, advocacy.  It is so hard to keep up with what is happening in the URGENT file (the moles appearing quickly on the screen) much less to delve into understanding where it is coming from or what is causing them to pop-up in the first place (ongoing systemic issues that require deeper investigation along with committed effort and resources to address).   

Crystal with help of others has provided this site with extensive information that shows the moles on the screen in the “Urgent” file and additional in-depth sourcing information that gives a view into the tunnel to understand why.  I applaud this approach to allow ANYONE interested to participate at whatever level desired.

So, let’s play a round of Whack-a-Mole together… shall we?!  For today, I select the Medicaid funding channel and the current “Urgent” mole is the imminent change at the end of this month from CAP-MRDD plan to the CAP-IDD Plan.  This does not affect those who are currently being served through NC Innovations Waiver.  See the CAP-IDD Decision Flowchart below:


Please share your thoughts, and also let us know which “mole” should we take a whack at understanding better at our next blog time together?   (Be aware that just like the game, we often have a “mole” appear in the same place many times usually for different aspect of that topic that needs dealing with at that moment)…    
    
To all those who know that “Game Over” can truly be a life and death matter for those we love and does reflect the overall health of a community, too!    ~ Anna