What's New in December

December 2012 news, events, and updates.

• WRAL (SpED) Teacher of the Week
• Important Information regarding the Supports Intensity Scale from a provider / mother.
• Arc NC Action Alert.
• NCGA Meeting Notice: JLOC on HHS, 12/11.
• added to Google events calendar.
• From the Arc NC: Tillis Requests Special Session To Address PCS/Group Home Crisis
• Alliance Behavioral Healthcare Weekly Updates, 11/30

[ What's New Main ]

Connecticut Shooting Raises Questions About Autism

From DisabilityScoop

[ view original article here ] 

Connecticut Shooting Raises Questions About Autism

By MICHELLE DIAMENT

December 17, 2012

News that the gunman responsible for the Connecticut school shooting last week was reportedly diagnosed with Asperger’s syndrome is coming with a dose of caution from autism advocates.

A law enforcement official told The Associated Press over the weekend that Adam Lanza, 20, had Asperger’s. Lanza killed 26 people at the Sandy Hook Elementary School in Newtown, Conn. Friday, most of them children in the first grade.

But autism advocates say the diagnosis does not explain the mass shooting and point out that there is no link between the type of planned violence that Lanza displayed and the developmental disorder.

“There is absolutely no evidence or any reliable research that suggests a linkage between autism and planned violence,” reads a statement from The Autism Society. “To imply or suggest that some linkage exists is wrong and is harmful to more than 1.5 million law abiding, non-violent and wonderful individuals who live with autism each day.”

Those who knew Lanza described him to The New York Times as shy and socially awkward. While those traits are characteristic of autism, self-advocates caution that having the condition does not suggest whether a person will do good or bad things in life.

“While the majority of statistics prove that we are infinitely more prone to be the victims of violence than the perpetrators of violence, we are not immune from becoming people capable of making terrible, horrible choices. No one is,” said Michael John Carley, executive director of the Global and Regional Asperger Syndrome Partnership.

Nonetheless, experts at the Judge David L. Bazelon Center for Mental Health Law said the tragedy calls attention to the lack of mental health services currently available.

“The real problem is that community based services — including mobile crisis services, assertive community treatment, peer supports and supportive housing — are in short supply, delaying hospital discharges and resulting in mental health crises that could otherwise be prevented,” the organization said in a statement. “A stronger commitment to vital community mental health services is long overdue and must be paired with improved gun laws in order to prevent future tragedies.”

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

[ view original article here ]

Disability Caregiving Can Be Health Hazard, Study Finds

By SHAUN HEASLEY

December 17, 2012

Parents of children with developmental disabilities are experiencing health consequences stemming from their caregiving responsibilities, a first-of-its-kind study suggests.

Researchers found that parents of those with developmental disabilities have higher blood pressure than those with typically developing children. Given the risk of cardiovascular disease facing such parents, the finding “reinforces the notion that caregiving is hazardous to one’s health,” researchers report in the study published this month in the journal Research in Developmental Disabilities.

For the study, researchers followed a group of 35 parents of children with developmental disabilities and a control group of 30 other moms and dads. All of the parents wore a blood pressure monitor for 24 hours and each responded to questions about themselves, their stress level, the types of behaviors their child displays and the extent of support they receive from others.

Overall parents of kids with developmental disabilities reported a higher level of perceived stress, more challenging behaviors and less social support. What’s more, the parents of kids with special needs had higher blood pressure on average at all points during the 24-hour period, the study indicates.

Significantly, when researchers controlled for various factors, they found that challenging behaviors and stress level were not associated with the blood pressure level recorded, but the amount of social support was.

“We found these parents, who were mostly caring for children with autism and Down’s syndrome, were more stressed and had less social support had higher blood pressure than other parents,” said Stephen Gallagher of the University of Limerick in Ireland who led the study. “More importantly it was reporting of lower social support that seemed to explain the higher blood pressure in these caring parents.”

The study is the first to directly measure and compare the blood pressure of these two groups of parents, researchers said.

Gallagher and his colleagues said the findings highlight the need for better supports for caregivers.

WRAL (SpED) Teacher of the Week

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

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

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

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

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

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

Important Info. re: SIS

Forwarded to me by a provider / mother...

*Note attachments below.

-----------

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

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

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

EXAMPLE:  Using the toilet. 

Compared to a same aged, non-disabled person, what is the frequency of support needed?

O = none or less than monthly

1 = at least one a month, but not once a week

2 = at least one a week, but not once a day

3 = at least once a day, but not once an hour

4 = hourly or more frequently

Compared to a same aged, non-disabled person, what is the daily support time needed?

0 = none

1 = less than 30 minutes

2 = 30 minutes to less than 2 hours

3 = 2 hours to less than 4 hours

4 = 4 hours or more

Compared to a same aged, non-disabled person, what is the type of support needed?

0 = none

1 = monitoring

2 = verbal/gestural prompting

3 = partial physical assistance

4 = full physical assistance

SIS Form Example for Adults

SIS Child Version

Arc NC Action Alert!

There are three important federal matters that require your immediate advocacy!

Don't Go Over the Fiscal Cliff!

What's the Issue? If the deficit negotiations are not complete by January 2nd, the country faces steep automatic budget cuts ("sequestration") on everything from Defense to IDEA and Head Start, Vocational Rehabilitation, Section 811 housing among others. It would hurt all Americans, including those with intellectual and developmental disabilities. Click here to learn more...

What can I do? Send a letter to Senators and Representative telling them that sequestration is not an option. It's easy, just click below, enter your zip code, and our system will automatically generate a message that's ready to send. We encourage  you to personalize the pre-generated message.

Click Here to Send a Message to Your Senators and Representative!

Ratify the Convention on the Rights of Persons with Disabilities!

What's the Issue? The United Nations Convention on the Rights of Persons with Disabilities (CRPD) empowers individuals with disabilities across the globe to be independent and productive citizens while treated with respect and dignity by outlining rights of citizens and responsibilities of their home countries.   Based largely on US law, the CRPD would not change our laws or cost any money.  Instead, ratifying the CRPD would give the U.S. the opportunity to provide technical assistance and guidance to over 125 countries in a meaningful way. Click here to learn more...

The Senate may take up the CRPD as early as TODAY.  Senators Burr and Hagan need to hear from you now.

What Can I do? Sen Hagan has said she supports ratifying the CRPD, but Sen. Burr's position is unknown. Send a letter to Sen. Burr urging him to vote in favor of ratification of the CRPD. It's easy, just click below, enter your zip code, and our system will automatically generate a message that's ready to send. We encourage  you to personalize the pre-generated message.

Click Here to Send a Message to Sen. Richard Burr!

Stop H.R. 2032!

 What's the Issue? H.R. 2032 is a bill that would place restrictions on the ability of state Protection and Advocacy Agencies (such as Disability Rights NC) to bring class action lawsuits on behalf of individuals with disabilities in intermediate care facilities, effictively creating a seperate type of 'justice' for people with I/DD. This bill is opposed by The Arc, Disability Rights, The American Bar Association, and many more. It's primary supporter outside of Congress is a group called Voice of the Retarded. Click here to learn more...

What  Can I do? Contact Rep. Howard Coble (R-NC), a co-sponsor of the bill, and let him know that this bill is NOT in the best interest of people with intellectual and developmental disabilities. It's easy, just click below, enter your zip code, and our system will automatically generate a message that's ready to send. We encourage  you to personalize the pre-generated message.

Click Here to Send a Message to Rep. Coble!

NCGA DHHS-JLOC Meeting, 12/11

NORTH CAROLINA GENERAL ASSEMBLY Raleigh, North Carolina 27601

November 30, 2012

MEMORANDUM

TO: Members, Joint Legislative Oversight Committee- Health and Human Services FROM: Senator Louis Pate Representative Nelson Dollar, Co-Chair Representative Justin Burr, Co-Chair SUBJECT: Meeting Notice DAY DATE TIME ROOM Tuesday December 11, 2012 10:00 am 3:00   pm 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_

Tillis Requests Special Session To Address PCS/Group Home Crisis

From The Arc of North Carolina

Tillis Requests Special Session To Address PCS/Group Home Crisis

Special Session first step to solve crisis before Holiday break   Speaker of the NC House Thom Tillis has formally requested that Governor Perdue convene a Special Session of the General Assembly in order to address the looming Personal Care Services (PCS) crisis that threatens the housing of thousands of people with disabilities living in group homes. The Arc of North Carolina is thrilled by this development and appreciates the Speaker's leadership on this issue and his continued dedication to North Carolinians with intellectual and developmental disabilities. The Arc will continue to keep you updated on the PCS/Group Home Crisis as it develops. Please check www.ArcNC.org for information as it happens. The Arc's advocacy staff is evaluating it's next steps in terms of advocacy. Look for an action alert next week. The letter from the Speaker's office is below. See a copy of the original here. --- Governor Perdue, As you know, the General Assembly appropriated $39.7 million in this year's budget to provide for temporary, short-term assistance to residents who would no longer be eligible to receive Medicaid State Plan Personal Care Services under the new eligibility criteria, effective January 1, 2013. The budget provision was drafted as a short-term measure to ensure the funds went to those affected residents who would be potentially discharged from their facility, but would not immediately have a safe community placement. This budget provision was intended to prevent the Department of Health & Human Services from using funds for administrative expenses, appeals, rent deposits, or other items, as requested by the Department during budget negotiations. The Blue Ribbon Commission was summarily tasked with developing long-term solutions to ensure Medicaid beneficiaries receive the services they need. The General Assembly has been working diligently over the last several weeks and months to determine solutions that would prevent the potential unintended closure of mental health and IDD group homes at the conclusion of this calendar year. It is now incumbent upon all of us to do what is necessary to solve this problem. In order to ensure that our state's most vulnerable citizens are protected and allowed to remain in their homes, it is my opinion that legislative action by the General Assembly is needed. Therefore, I respectfully request that you convene a Special Session of the General Assembly under the authority granted to you by Article Ill, Section 5(7) of the North Carolina Constitution. The North Carolina House of Representatives stands ready to take immediate action to resolve this impending problem. If you should decide to convene a Special Session, you have my word that no additional matters will be taken up by the House of Representatives. We will act quickly and decisively to protect the residents of mental health and IDD group homes, and the session will end when that action is concluded. I look forward to your prompt reply. Thank you for your time and attention concerning this very important matter. Sincerely, Thom Tillis   cc: Senator Phil Berger

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:

http://www.alliancebhc.org/consumers-families/idd-resources/nc-innovations-1915-c-waiver

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!