Monday, March 31, 2008

Notice of Workshop: What Will Happen to Me?

What Will Happen To Me?
A Workshop on End-of-Life Issues for Persons with Developmental Disabilities

Saturday, April 12, 2008 from 9:00 a.m. to 1:00 p.m.
The Seymour Center, 2551 Homestead Road, Chapel Hill, NC

For many years, advocates have sought equal access and equal rights for people with developmental disabilities. As a result, consumers with developmental disabilities have the right and increased opportunity to plan their own lives, choose their own support, and live their lives with dignity and respect.
In addition to the challenges that all people face at end of life, consumers with developmental disabilities, their family members, guardians and the health care system face a unique set of challenges:

. Consumers with developmental disabilities lack opportunities to
learn more about choices and options throughout the course of their lives, so that their wishes can be respected.

. Family members and guardians who provide care and/or assist their
family members in decision-making look ahead to their own aging and end of life. They want to ensure the best support will continue for their family members with developmental disabilities when they are no longer able to provide support.

. Professionals face challenges in helping consumers and family
members to explore their options, talk together about choices and have wishes honored.
Consumers with developmental disabilities, their family members, guardians and professional providers need specialized resources and support to plan ahead for end of life more effectively.
In the words of one consumer following the death of her parents, people with developmental disabilities need to know: "What Will Happen to Me?"

Event Description and the Keynote Speaker

On April 12, 2008, Project Compassion will offer a workshop for consumers
with developmental disabilities, their family and friends and professionals
to explore these important issues and offer tools and strategies for
planning ahead.

The keynote speaker will be nationally respected author and leader in the
field Jeffrey Kauffman, LCSW. Kauffman has taught at Bryn Mawr College
Graduate School of Social Work and Social Research and at the Center for
Social Work Education of Widener University. He has consulted with more
than 25 mental retardation agencies in direct grief support services for
staff and clients, training, and program development.

Kauffman is the author of Guidebook on Helping Persons with Mental
Retardation Mourn and is the editor of 2 books: Awareness of Mortality and
Loss of the Assumptive World. He is the author of numerous articles on
death and dying.

Kauffman's work has been widely praised nationally. Kenneth J. Doka, PhD,
one of the best-known national leaders in the field of grief and loss,
offers strong support for Mr. Kauffman's latest book: "Jeffrey Kauffman
has to be commended for meeting the needs of an underserved and
disenfranchised population of grieving persons. The Guidebook is both
theoretically sound and eminently practical, and a real gift to the fields
of developmental disabilities and thanatology."

The schedule for the workshop will be as follows:
9:00 - 9:30 Registration
9:30 - 10:30 Opening Keynote by Jeffrey Kauffman:
We Need to Talk: Bridging the Communication Gaps
Consumers, Family Members and Professionals When It
Comes to End
of Life
10:30 - 10:45 Break
10:45 - 11:45 Attorney Panel
Can You Help Me: Understanding the Key Legal Issues
Facing Consumers and Family Members at End of Life
11:45 - 12:00 Break
12:00 - 1:00 Closing Keynote by Jeffrey Kauffman:
They're Not Coming Back: How Grief and Loss
Affects Consumers, Family Members and Professionals

The registration cost for this workshop is $25.00 for Participants and
$15.00 for Consumers, Seniors and Students who register by March 31, 2008.

The registration cost after March 31, 2008 will be $35.00 for Participants
and $25.00 for Consumers, Seniors and Students. Individuals my register
online by going to the Project Compassion website: or by calling (919)

Important Upcoming Event: April 2nd BODY&SOUL: DIANA&KATHY

Academy Award Nominated DirectorALICE ELLIOTT

A poignant film portrait of two women determined to make a differenceSneak PreviewWednesday, April 2 at 7 p.m.UNC School of Social WorkTate-Turner-Kuralt BuildingUNC, Chapel Hill325 Pittsboro Street

Seating is limited and admission is free. Donations accepted. The UNC School of Social Work and the Jordan Institute are located in the Tate-Turner-Kuralt Building on the western edge of the campus. Our building is located across the street from the State Employees Credit Union, and in between the FedEx Global Education Center and the School of Public Health.

Alice Elliott will be in attendance to answer questions about the film and the Festival.

For more information contact Arc of Orange County Executive Director, Robin Baker, at (919) 942-5119

Monday Quick Hits: Hot Policy Topics for This Week

North Carolina:
This week is going to be a slow one at the General Assembly. I am labeling it the calm before the storm. Next week there will be a series of appropriation subcommittees meeting to begin the process of looking at funding proposals. Rumor has it that the Appropriation Chairs would like to have a clear idea of budget requests prior to the start of session. So enjoy the lull, the storm is on its way.

Monday, March 31, 2008
The General Assembly has no committee meetings scheduled for today.

Tuesday, April 1, 2008
The General Assembly has no committee meetings scheduled for today

Wednesday, April 2, 2008
9:30 a.m. The Revenue Laws Study Committee meets, 544 LOB.
1 p.m. The Joint Select Committee on Governmental Immunity meets, 1228/1327 LB.

Thursday, April 3, 2008
11 a.m. The Joint Legislative Domestic Violence Committee meets, 643 LOB.
Friday, April 4, 2008
9 a.m. The General Statutes Commission meets, 1027 LB.


U.S. Congress:

Session break is over. Congress is slated to get back to business this week.

The Congress returns to work today after a two-week spring recess. The Congress will be in session for an eight week period before the Memorial Day recess. This will be a key time to move bills that have a chance for enactment this year. The war and the economy will continue to dominate the agenda. Congressional Democrats want to end the war sooner than the Bush Administration does, but know that any related bills sent to the President will be vetoed. Democrats do not have the votes to override these vetoes. Action on housing financing will also be a priority in the coming weeks. Completing action on the FY 2009 Budget Resolution will take center stage in April.

The States

Several reports are concluding that more and more state budgets are in serious crisis, mostly due to the impact of the worsening national economy. Drastic revenue shortfalls in property and sales taxes are creating large deficits and forcing states to curtail spending. Twenty-two states report major budget problems with California, Florida, Rhode Island, Maine and New Jersey needing to make dramatic cuts in human services, including disability programs. With the White House threatening to veto any FY 2009 appropriations bills that spend above the amounts requested by the Administration, little help is likely from the federal government to alleviate the crisis in the states.


On Tuesday, the House Ways and Means Committee’s Health Subcommittee, chaired by Rep. Pete Stark (D-CA), will hold a hearing on the 2008 Medicare Trustees Report.


On Thursday, the House Energy and Commerce Committee, chaired by Rep. John Dingell (D-MI), will hold a hearing on the Protecting the Medicaid Safety Net Act of 2008 (H.R. 5613). This critical legislation will place a one-year moratorium on harmful Medicaid regulations, including the rehabilitation option, school based administration/transportation and case management regulations. The hearing can be viewed on video web cast by accessing

National/International Other:

UN Convention on Disability Rights Webcast:
On Monday, the American University Washington College of Law hosted a webcast to review the current status of the United National Convention on the Rights of People with Disabilities and to lay out a road map for the United States to ratify the convention. We will have a report on this event posted by tomorrow.

Read more:

Julia's Musings: What Happened to the Friday Wrap Up Last Week???

Inquiring minds wanted to know why there was no Friday Wrap Up. Here is the answer...the blogger was at The Arc of North Carolina Board Meeting working on finalizing The Arc of North Carolina Legislative Agenda for 2008. We will be posting a Wrap Up of last weeks happenings tomorrow. Thanks for understanding and check back later for This Weeks Hot Topics!

Thursday, March 27, 2008

NC Legislative Update: Mental Health, Developmental Disabilities, Substance Abuse Legislative Oversight Committee Meeting

Legislative Update: Mental Health, Developmental Disabilities, Substance Abuse Legislative Oversight Committee Meeting

On Wednesday this legislative oversight committee began the process of hearing staff, member and department recommendations. The majority of the reports centered on issues around Mental Health. Reports regarding issues around serving people with Developmental Disabilities will occur at the next scheduled meeting. Secretary Dempsey Benton also presented his report later in the afternoon.

Of interest to advocates of affordable housing for people with developmental disabilities was a presentation by Julia Bick (DHHS) and Trisch Amend (NC Housing Finance Agency).

For the FY2007 the General Assembly appropriated $10, 937,500 for capital and $1,205,000 recurring Key Program operating subsidies.

The results of these appropriations allowed this program to finance 430 units in 65 developments across 33 counties. 189 households received Key Program rent assistance through this appropriation cycle.

For the FY2008 this program received $7,500,000 to be used in capital and $3,500,000 recurring key Program operating subsidies.

Last session appropriation to this program allowed DHHS and the Housing Finance Agency to award 120 unit of Key Program assistance, with a second round of applications due in by mid April.

The Arc of North Carolina was a recipient of funding for eight supported units. Four of these units were opened in December. Opening Doors Durham serves eight people with developmental disabilities in four supported scattered site apartments serving eight people with developmental disabilities. In January, we held a ribbon cutting for Opening Doors High Point. These units are also supported scattered site apartments serving eight people with developmental disabilities.

The Housing 400 Initiative is one of the most successful initiatives to emerge from Mental Health/Developmental Disabilities/Substance Abuse Reform. We hope our elected officials see the need to invest in this program and to make the capital funding recurring. Affordable housing is the “key” to a successful independent life.

Tuesday, March 25, 2008

Leaving Our Youth with Disabilities Behind

Leaving our youth with disabilities behind
Thursday, March 20th, 2008-Posted Orginally On NC Policy Watch

A recent report from the National Council on Disabilities offers some startling and sobering numbers regarding children in the nation’s foster care system. These data ought to serve as a warning to all of us to demand more from our policymakers and public institutions. Here are some of the “highlights” of the report:

Currently in the United States there are approximately 500,000 youth in the foster care system. As many as 800,000 such kids are served by the system each year. Thirteen percent of all youth aged 6 through 14 being served by the system have at least one documented disability.
The report from NCD lays out some “troubling patterns” in relation to youth with disabilities in foster care. For instance, youths with disabilities are 1.5 to 3.5 times more likely to have been abused or neglected.

Half the youths studied had mental problems, compared to 22% of the general public. Twenty-five percent had post-traumatic stress disorder, compared to 4% of the general public. Twenty percent had major depression, compared to 10% of the general public.
These challenges for youth in foster care spill over into their academic progress.

The report states that 30 to 40% of children in foster care are in special education. Many of these youth never finish high school. According to the report, only 9% of youth with disabilities attend a four year college and only 5% attend a vocational or technical school.

For foster youth with disabilities that do make it to college, only 5% complete their education. These numbers compare very unfavorably to the general public, where 60% of students graduating from high school continue on to college and 20% of students under the age of 25 attending a college program complete their degree.

State numbers parallel the NCD data. For instance, a recent report issued by the North Carolina Department of Public Instruction shows that the four year graduation rate for youth with disabilities was only 49.9 percent, the lowest graduation percentage of all groups presented, while the graduation rate for the general population is 68.1 percent.

Youth with disabilities must have their educational and health needs met. We can no longer ignore the serious disparities that are occurring in this population. When a child with a disability does not receive a high quality of education, strong supports in transition services, affordable housing opportunities and access to employment options, our society has failed them.
Fortunately, there are solutions to these challenges. The National Council on Disabilities recommends the following:

Better collaboration between different service providers in the provision of “transitional services” that assist persons with disabilities enter the societal mainstream.
Better transition planning to help youth with disabilities in foster care transition to adulthood and achieve self-sufficiency.

Community organizations and the business sector should play stronger roles in providing transition services.

Transition services for youth with disabilities in foster care should be comprehensive and individualized and offer a full range of appropriate services.
Transition services should include exposure to the “independent living” philosophy, “hands-on” life skills opportunities, and networking opportunities.
More should be done to ensure access to appropriate transition services for youth with disabilities in the foster care system.

Colleges and other postsecondary learning institutions should better reach out to youth with disabilities.

Transition plans must take into account access to housing for both youth with disabilities and foster youth.

Institutionalized youth with disabilities in foster care are at great risk of being disconnected from society’s networks and should therefore be provided access to even more connecting services.
Youth should be eligible for needed transition services beyond age 21. State child welfare agencies should make transition services available for youth with disabilities up to age 23 or 24 when deemed appropriate.

The bottom line: There are serious and growing disparities that youth with disabilities face both in and out of the foster care system. These disparities show that we need to invest more and invest smarter in this vulnerable population. Until our state and nation face up to this hard reality, we will be consigning thousands of our citizens to lives of unfulfilled promise. We can and must do better.
Want to know more? You can read the NCD report at

Chris Fitzsimon Speaks Out for Students with Disabilities

Students with disabilities dropping out of high school is a big issue in our state. 4,050 students with disabilities in 2006-2007 dropped out. This blog has spoken to the issue of abysmal graduation rates for students with disabilities.

Today, Chris Fitzsimon added his voice to the debate. In his daily radio commentary he addresses the constitutional right to an equitable education for students with disabilities. We at The Arc of North Carolina Policy Blog applaud his comments and appreciate his attention to this issue.

Click on this link to hear the story:

Monday, March 24, 2008

Monday Quick Hits: Hot Policy Topics for this Week

North Carolina

Monday, March 24, 2008

10:00 a.m. The 21st Century Transportation Committee, 643 LOB.
Today the 21st Century Transportation Committee will hear a presentation from NCTRAM (North Carolina Transportation Reform and Modernization). NCTRAM is a coalition of concerned public interest groups, including but not limited to AARP, MHA-NC, The Arc of North Carolina and NC Housing Coalition. NCTRAM would like to see future transportation needs addressed in a manner that address the needs of all segments of society, promotes sound economic development and contribute to a high quality of life for all North Carolinians. Smart growth.
The committee will also hear updates from all of the subcommittee groups. These subcommittee groups include; intermodal transportation, finance, prioritization and intergovernmental. On April 24th the full committee will meet to discuss all proposals from the subcommittees and begin the process of moving their short legislative session agenda forward.

Tuesday, March 25, 2008

10:00am The Joint Legislative Commission on Dropout Prevention and High School Graduation, 643 LOB.

As reported last week, the Dropout Prevention Commission has been hearing a series of presentation regarding the state of our North Carolina education system. As reported on The Arc of North Carolina Policy blog, 4,050 students with disabilities dropped out of high school during the 2006-2007 academic year. This committee will continue to hear presentations addressing how to keep kids in high school. An agenda for this meeting is not available at this time.

Wednesday, March 26, 2008

10:00 a.m. The Joint Legislative Oversight Committee on Mental Health, Developmental Disabilities and Substance Abuse, 643 LOB.
This committee will meet to hear reports from the Department and staff. These reports will generate discussion regarding the direction of legislative proposals from this committee. There will also be a presentation on the Housing 400 Initiative.

12:30 p.m. The House Select Committee on Rising Home Foreclosures, 1027/1128 LB
Housing foreclosures are on the increase in North Carolina. This committee has been hearing information regarding how foreclosures affect the market rate for all home property sales. No agenda was available at this time.


Congress is still on break. They will reconvene on March 31st.

Thursday, March 20, 2008

Happy Spring Everyone!

The Arc of North Carolina Policy Blog is taking a Spring Break! We will be back on Monday.

Announcement: Body&Soul at the Full Frame Documentary/Sneak Preview

Academy Award Nominated Director

A poignant film portrait of two women determined to make a difference

Sneak Preview
Wednesday, April 2 at 7 p.m.
UNC School of Social Work
Tate-Turner-Kuralt Building
UNC, Chapel Hill325 Pittsboro StreetSeating is limited and admission is free. Donations accepted.
The UNC School of Social Work and the Jordan Institute are located in the Tate-Turner-Kuralt Building on the western edge of the campus. Our building is located across the street from the State Employees Credit Union, and in between the FedEx Global Education Center and the School of Public Health.
Alice Elliott will be in attendance to answer questions about the film and the Festival.

For more information contact Arc of Orange County Executive Director, Robin Baker, at (919) 942-5119

With the support of the Full Frame Documentary Film Festival, there will be a sneak preview of BODY & SOUL: DIANA & KATHY on Wednesday, April 2, 2008 at 7 pm. The screening is sponsored by the Arc of Orange County and takes place at UNC School of Social Work, Tate-Turner-Kuralt Building, 325 Pittsboro Street in Chapel Hill.

NEW YORK, NY – March 20, 2008 -- BODY & SOUL: DIANA & KATHY, the new short documentary film directed by Academy Award nominated filmmaker Alice Elliott (The Collector of Bedford Street, 2002), is an official selection of the 2008 Full Frame Documentary Film Festival in Durham, NC. The film runs Friday, April 4 at 10:15 am. Durham-born Director Alice Elliott and Producer, Simone Pero Audi, will be in attendance for a Q&A session after the screening. BODY & SOUL: DIANA & KATHY was nominated for the 2007 IDA Documentary Award and was an official film festival selection of Big Sky Documentary, Mill Valley, Heartland, Hot Springs, Rocky Mountain Women’s, Santa Barbara International, Palm Springs International, Cleveland International, Brattleboro Women's and the Nazariya Women's Film Festival in India.

BODY & SOUL: DIANA & KATHY is a rare look at an unusual relationship between two women determined to make a difference for all people with disabilities. Diana Braun who has Down Syndrome, and Kathy Conour who is non-verbal and has Cerebral Palsy met at a sheltered workshop in Illinois three decades ago and vowed to live independent, non-institutionalized lives. Fearful of being shut away in a nursing home or forced into a state run institution, Diana and Kathy broke the rules, escaped the system, and survived to tell their story. Told in an intimate, verité style, the film allows the viewer into a private world and sweeps us up into a way of life rarely seen on the big screen.

Award-winning director Alice Elliott is known for making intimate films about people who are traditionally overlooked. “I’m creating change in the world by telling stories that might not
get told. Exploring the ability to use art for change gives me a purpose to get up every morning. I like being an artist and an activist,” says Elliott. This film is made possible in part by a grant from the Illinois Humanities Council, the National Endowment for the Humanities, and the Illinois General Assembly, The Illinois Council on Developmental Disabilities, and the Independent Television Service (ITVS).

About Welcome Change Productions
Welcome Change Productions is an independent, documentary production company that is committed to giving a voice to people and stories that are traditionally not depicted on film and television. We strive to capture narratives about community and about the individuals who create communities. The goals of telling a story and inspiring change frame our productions. We believe a good story can educate, motivate, and transform us. For more information about BODY & SOUL: DIANA & KATHY, visit

Welcome Change Productions
Director/Producer: Alice Elliott, 212-924-7151,
Producer: Simone Pero Audi/For Impact Productions,

NC General Assembly: Weekly Legislative Wrap Up

This week was a short one at the General Assembly. There were committee meetings on Tuesday and Wednesday only. Thursday the General Assembly convened an Extra Session to consider the expulsion of Representative Thomas Wright.

The Joint Legislative Transportation Committee

On Tuesday this committee met to hear presentations by the NCDOT (NC Department of Transportation), Charlotte Area Transit System and the Triangle Transit Authority.
NCDOT presented an update on the transformation of the NCDOT. Roberto Canales presented the committee on the NCDOT’s efforts regarding strategic direction, planning, prioritization, performance and accountability for the new NCDOT.

Charlotte Area Transit System presented on the success of Charlotte’s light rail and expanded bus system. Here are some of the highlights:
-Opened in November 24, 2007
-15 Stations (7 park&rides)
-Operates seven days a week from 5:00 a.m. to 1:00 a.m.
-Ridership is above original projection of 9,100 by the end of first year.
-Over $1.5 billion in actual and proposed corridor development through 2001.

Charlotte Transit received funds from the General Assembly, the federal government, and created a ½ cent sales tax to pay for this transit system. Expansions are planned to the Charlotte Transit System.

See the presentation:,%202008/Presentations/Transportation%20Oversight%20Committee%20-%20March%2018%202007.pdf

Triangle Transit Authority presented on the future expansions of the TTA. These expansions, if funded and approved, will focus on additional bus service connecting Raleigh, Durham, and Chapel Hill.

Transportation Poll:So how do the citizens of North Carolina feel about transit and where should we be investing tax dollars when it comes to transportation? Elon University released a poll this week that explores the answers to just those questions. The Elon Poll found that 61 percent of those questioned would embrace car pools, 59 percent supported train service expansion, 58 percent favored light rail service and 53 percent found bus services a real option.

Check out the Elon Poll:

Joint Study Committee on Autism Spectrum Disorder and Public Safety.

On Wednesday this committee met to hear a presentation from William C. Chandler on the new Silver Alert Program. Silver Alert is similar to Amber Alert.
The legislation that created Silver Alert was passed during the 2007 Legislative session.
A Silver Alert is activated based on the following criteria;
1. a person is 18 years or older;
2. the person is believed to be have Dementia or is a person with a cognitive disability;
3. a person is believed to be missing regardless of circumstance;
4. a legal custodian has made a Missing Person Report to local law enforcement;
5. the local law enforcement agency reports the incident to the NC Center for Missing Persons.
Several committee members asked if the “Take Me Home” program could be instituted state wide or if the Silver Alert Program could have the age requirement removed from it so that it could serve more people with Autism and developmental disabilities. Both of these options are currently under review by the committee members and staff.


On Tuesday this committee met to review the progress of high speed internet into our state’s rural areas. One option that came up during this meeting was the use of continued private/public telecommunication partnerships to expand high speed services.

Extra Session:

Today the House of Representatives convened an Extra Session of the House to consider a motion to expel Representative Thomas Wright –D (NC House District 18, New Hanover). After a somber House session, the members voted to expel Representative Thomas Wright. A House Special Committee has spent the past three months reviewing evidence of misuse of campaign donations, charitable donations and loans obtained as a member of the House. The final vote today was 109 Aye to 5 No.

The following sites have coverage of today’s events:

NC Policy Watch for today’s Fitzsimon File:

News and Observer

Also check out the coverage on the following political blogs:

Under the Dome:
Capital Beat:
Isaac Hunters Tavern:

Julia's Musings: Update on Accessible Parking on Jones St.

Alas, the blue hoodies with the international symbol for accessible parking were gone yesterday. Apparently they were replacing the meters. Of course, if you do have an accessible parking permit you may occupy a metered parking space without a time or cost to you. So, we are back to status quo.

Tuesday, March 18, 2008

Julia's Musings: How Many Students with Disabilities Dropped Out? This Many.

Last week the Department of Public Instruction-Exceptional Children Programs presented to the Education Oversight Committee a report detailing the current state of educational service models for students with disabilities. During this presentation it was revealed that 4 LEAs in 2006-2007 did not graduate a single student with a disability. The report also disclosed that fewer than 42% of students with disabilities did not attain a Level III score or better on the End-of-Course tests.

Late today we received the full, eighteen page report from the North Carolina Department of Public Instruction Exceptional Children Programs. How many students with disabilities dropped out last year? 4,050. How many students graduated with a diploma? 5,179. How many students received a certificate? 1,011. How do these dropout numbers compare to previous reports? In 2003-2004 there were 3,876 dropouts, and in 2004-2005 there were 3,799. These numbers are based on youth with IEPs..

Who were those four LEAs that did not graduate a single student with a disability, and how many students were affected? Now we know. The 4 LEAs had a total drop out number of 56 students. Scotland County had all 38 of its students with disabilities drop out. That is 100%. Scotland County was joined by Chatham County (4), Graham County (6) and Franklin County (8). What was not mentioned in the presentation, but was included in the report was that five Charter schools also had a 100% drop out rate for students with disabilities. These Charter schools are Central Park (1), Chatham Charter (1), Crossroads Charter High (2), Sandhills Theatre Arts Renaissance (1), and Woods Charter (1).

Three LEAs and eight Charter schools did manage to have 100% of students with disabilities exit with either a diploma or a certificate in 2006-2007. The LEAs are Thomasville City Schools (9), Tyrrell County Schools (8), and Camden Schools (3). The Charter schools are CG Woodson School of Challenge (1), East Wake Academy (2), Gray Stone Day (1), Hawbridge School (6), Kennedy Charter (5), Pace Academy (12), Raleigh Charter High (12), and River Mill Academy (3).

These sixty two children attending these four LEAs and Charter schools are just tip of the iceberg. There are over 4,000 students with disabilities who did not get a cap and gown last year, who did not hear pomp and circumstance, and who did not receive a diploma or a certificate from their high school. Clearly, we need to continue to challenge our schools to do more for students with disabilities, who deserve and should demand equitable educational opportunity.

Read More:
Education Oversight Committee

Julia's Musings: Accessible Parking at the General Assembly an Observation

So, today I arrived at the General Assembly to attend the Joint Legislative Transportation Committee. I normally park on the street at one of the multiple parking meter slots on Jones.
This morning I was greeted with multiple fully marked accessible parking spaces all along the south side of Jones Street. Every one of the meters was covered with a blue "hoodie" complete with the international symbol for accessibility. Now if this is a temporary change or a permanent change is anyone's guess. I'll keep an eye on it and let you know.

Monday, March 17, 2008

United Nations Update: United Nations Convention on the Rights of People with Disabilities

On Monday, March 31, 2008 American University of Washington College of Law Center for Human Rights and Humanitarian Law and Mental Disability Rights International along with multiple co-sponsors will be hosting a live webcast working session to develop an action plan to build support for ratification of CRPD.


The United Nations Convention on the Rights of People with Disabilities (CRPD)
March 31, 2008 12 noon – 5:30pm
1:30 Keynote Presentation: The Honorable Tony Coelho
Working Session to develop an action plan
to build US support and ratification of the CRPD
Moderated by: Bobby Silverstein & Jeff Rosen


Action Plan to be posted at
By April 30, 2008

American University Washington College of Law Center for Human Rights & Humanitarian Law
Mental Disability Rights International

American Association of Persons with Disabilities
Disability Rights Education and Defense Fund (DREDF)
Human Rights Strategic Working Group
Landmine Survivors Network
National Organization on Disability
Ratify Now
Syracuse University – Burton Blatt Institute
US International Council on Disability (USICD)

Read more:

Monday Quick Hits: Hot Policy Topics for This Week

North Carolina

Tuesday, March 18, 2008
9:00am The Joint Legislative Transportation Committee Meeting, 1227 LB

There are currently two committees meeting to discuss the growing transportation needs in North Carolina. There have also been numerous stories regarding the state of the NCDOT. On Tuesday this committee will hear again about the NCDOT Transformation in a status report. The committee will then hear reports from the Charlotte Area Transit System and the Triangle Transit Authority. Funding is a key issue with expansion of transit options. Roberto Canales will present on public transportation funding options and Greg Thrope will close the day with a presentation on compliance with federal guidelines.

Wednesday, March 18, 2008
10:00am The Joint Study Committee on Autism Spectrum Disorder and Public Safety, 1027 LB

This committee will continue its discussion regarding how to serve the Autism community in relation to public safety. During the last meeting, members were presented with information regarding the innovative program “Take Me Home”. Again we stress that what comes out of this meeting should be expanded to people with developmental and cognitive disabilities outside of the Autism spectrum.
No agenda available at this time.

Tuesday, March 18, 2008
2:00pm The House Select Committee on High Speed Internet in Rural Areas Committee Meeting, 1124 LB
This is the first of two meetings this week that address technology initiatives. There exists a considerable technology gap in the disability community. In rural areas of this state high speed internet is limited. It is important as we move forward with education policy and health policy that we address the concerns of limited rural access to high speed internet.
No agenda available at this time.

Wednesday, March 19, 2008
10:00am The Joint Select Committee on Information Technology Meeting, 544 LOB
Committee members will hear presentation by Gary Bartlett-State Board of Election, Hold Anderson-Executive Director of NC Healthcare Information, and Gordon Neff from the Department of Health and Human Services (MMIS presentation). All very timely subjects.

Extra Session:
Thursday, March 20, 2008
10:00am An Extra Session of the House will convene to consider a recommendation to expel Representative Thomas Wright, D-Hanover, House Chamber, Legislative Building.


U. S. Congress

The Congress is now on a two week spring recess. When they return to work on March 31, they will face an uninterrupted eight week session where practically all “must pass” bills will need to progress in order to have a chance to become law before the scheduled adjournment in early October.

No Child Left Behind

Tomorrow, U. S. Secretary of Education Margaret Spellings will join Minnesota Governor Tim Pawlenty and Senator Norm Coleman (R-MN) in Saint Paul to make what is being couched as a major national policy announcement on No Child Left Behind.


On Tuesday, the House Financial Services Committee, chaired by Rep. Barney Frank (D-MA), will hold an oversight hearing on the U.S. Department of Housing and Urban Development (HUD) and its proposed budget for FY 2009. HUD Secretary Alphonso Jackson will testify.

Thanks to DPC for the Federal Update.

Top O' The Morning!

Happy St. Patrick's Day

Friday, March 14, 2008

Julia's Musings: This Week in Review

A lot happened this week at the General Assembly. Committee meetings are happening fast and furiously. Let’s take a quick look at some of the highlights.

Education Committee
On Tuesday this committee received a report from the Department of Public Instruction regarding the state of educational outcomes for students with disabilities. The report was not encouraging. As mentioned before only 42% of students with disabilities scored Level III or above on the 2006-2007 End-of-Course Tests in core subjects. But how bad was it really? Well, here is the break out on English I, for students with out disabilities 76% scored at Level III compared to student with disabilities where 36% scored at Level III. Here is another fact, we either start investing more in educating students with disabilities or we will be investing in more Medicaid services.

Public School Funding Formulas
On this committees agenda is the question on funding for students with disabilities. There was a brief discussion regarding the current 12% funding Cap. Senator Martin Nesbitt suggested that the committee might was to see if the current 12% Cap on Special Needs Funding is appropriate. He continued by asking the committee that if it is not appropriate then what it should be. Nesbitt stated “I would like for us to take a whack at it. There are some districts that have a really high enrollment of students with disabilities”. Excellent point! Let’s hope the other committee members were listening.

Last session, The Arc of North Carolina partnered with the Covenant with North Carolina’s Children to advocate for the passage of House Bill 1366 School Violence Prevention Act. This important legislation will standardize anti-bullying policy in all of our school districts. It includes language regarding the protection of children with cognitive, physical, and developmental disabilities. Children with disabilities often find themselves as the focus of classroom bullying. This week the Charlotte Mecklenburg School Board vote 6-3 to approve an anti-bullying policy which protects children with disabilities from bullying. We applaud the Charlotte Mecklenburg School Board and we hope the state legislators were reading the paper. Let’s pass House Bill 1366 this session and provide comprehensive statewide protections for students with disabilities.

Appropriations/State Budget

Appropriation subcommittees have also started meeting. On Wednesday the appropriations subcommittee on higher education met. The topic during this meeting was funding of the Nursing School. No votes were taken during this meeting. UNC President Erskine Bowles spoke earlier about the need to graduate more nurses, doctors, and medical professionals. Hopefully this means this important program will continue to receive funding.

So, that is the week in review. Next week the Transportation Oversight Committee meets to continue their discussions on state transportation needs. There will also be another meeting of the Joint Study Committee on Autism Spectrum Disorder, Law Enforcement, Public Safety and First Responders.

On Thursday the House will be back in session. An extra session has been called by the Speaker of House and the Governor to consider a recommendation to expel Representative Thomas Wright.

It will be a busy and interesting week and we will bring you a wrap up of all the activities on Friday.

Wednesday, March 12, 2008

Julia's Musings: Students with Disabilities Being Failed by our Education System

The Education Oversight Committee met on Tuesday to hear a presentation on the status of students with disabilities in our public education system. During the 2007 long session the general assembly passed House Bill 17 (Session Law 207-295) which required the Department of Public Instruction to identify various models being utilized to deliver education and other services at the high school level to children with disabilities.
The presentation on Tuesday was a direct result of this law, and the numbers and recommendations left more questions than answers. Let’s start with the numbers.

In regards to student performance, “fewer than 42% of students with disabilities scored Level III or above on the 2006-2007 End-of-Course Tests in core academics.” Looking at service delivery models as dictated by House Bill 17, we learned that in 2006-2007 48,387 students with disabilities were enrolled in grades 9-12. Of those students, 51.4% spent 80% of their day in general education, 22.4% spent 40-79% of their day in general education (resource setting), 21.9% spent 39% or less of their day in general education (separate setting) and 4.3% were in a separate school or homebound educational setting.

The bombshell of the day came when the presentation turned to student outcomes. 6 LEAs (Local Education Agency) had over 80% of students with disabilities exit with a diploma. 24 LEAs had 75% of students with disabilities exit school with either a diploma, a graduation certificate or a certificate of achievement. However, how that percentage broke down among those categories was never specified. Then there were the 4 LEAs that had 100% of students with disabilities exit school as dropouts.

You read that correctly. In 2006-2007, 4 LEAs reported that 100% of the students with disabilities exiting school were dropouts. The presentation did not discuss which LEAs are in this last group or how many students are represented by this abysmal percentage. To me it does not matter if it is one student or 20 students. It does not matter if it is a small LEA or a large LEA. The fact that in 2006-2007 in these 4 LEAs not a single student with a disability exited with a diploma, or a certificate of achievement, or a certificate of attendance but simply dropped out is disgraceful.

We have got to stop throwing away our future. We need to invest in an equitable academic opportunity for youth with disabilities. As ruled in the Leandro vs. North Carolina, the North Carolina constitution mandates that all of our citizens have a right to a sound, basic education. All includes students with disabilities.

Monday, March 10, 2008

Monday Quick Hits: Hot Policy Topics for This Week

North Carolina:

Tuesday, March 11, 2008

10 a.m. The Joint Legislative Education Oversight Committee meets, 643 LOB.

This is the first of two days worth of meetings. Day one will begin by presentations by the Superintendents of our public schools. Other topics to be addresses Exceptional Children Programs, A + Schools, AVID and Gateway to College Program. Day two will include a presentation by Howard Lee on the State of Education systems and UNC President Erskine Bowles will present on UNC Tomorrow.

Wednesday, March 12, 2008

9 a.m. The Joint Legislative Education Oversight Committee meets, 643 LOB.

Continuation of the two day meeting.

10 a.m. The Joint Appropriations Subcommittee on Justice and Public Safety meets, 544 LOB.

A sure sign that we are nearing the beginning of the short session is the discussion of funding. This is the first appropriation subcommittee meetings since legislative break began. There was no agenda available at this time.

1 p.m. The Joint Legislative Corrections, Crime Control, and Juvenile Justice Oversight Committee meets, 421 LOB.

1 p.m. The Senate Appropriations Subcommittee on Education/Higher Education and the Senate Appropriations Subcommittee on Education/Public Instruction meet jointly, 414 LOB.

Coming on the heels of a two day Education Oversight committee we have the first appropriation subcommittee meeting for an education committee. This meeting will coincide with a presentation by UNC President Erskine Bowles on UNC Tomorrow.

Thursday, March 13, 2008

10 a.m. The Joint Legislative Commission on Dropout Prevention and High School Graduation meets, 643 LOB.

Last time this committee met there were lots of questions regarding the recently released report on drop outs. Expect that to continue.

1 p.m. The Joint Legislative Study Committee on Public School Funding Formulas meets, 544 LOB.

No agenda available at this time.


Budget negotiations are underway. Tomorrow we will post a more detailed look at what is occurring in the early negotiation process.

The House Oversight and Government Reform Committee, chaired by Rep. Henry Waxman (D-CA), released The Administration’s Medicaid Regulations: State-By-State Impacts. The report is based on responses from state Medicaid Directors to the Committee’s request for information on state specific impacts of the Administration’s Medicaid regulations. Forty-three (43) states plus the District of Columbia responded. According to the states, the fiscal impact of the regulations would be much greater than the Administration has estimated. Even though states that were not able to provide specific estimates for each regulation having an effect on the state, to the extent they were able to provide estimates, the cumulative negative impact on states was $49.7 billion over 5 years, over three times the amount the Administration estimated. The Centers for Medicare & Medicaid Services (CMS) charged that the reports are based on non-reliable data. The report can be accessed at

The impact of these changes for North Carolina are as follows:

North Carolina

Cost limits for public providers (CMS 2258-FC)
Loss of federal funds in 2008: $430.60 million
Over 5 years: $2,187.00 million
"The resultant loss of support for the state’s public and private hospitals would … diminish the ability of the State to provide basic health care and services provided in a hospital setting to Medicaid and indigent recipients.”"

Payment for graduate medical education (CMS 2279-P)
Loss of federal funds in 2008: $84.00 million
Over 5 years: $420.00 million
"If this rule is finalized, the financial stability of our safety-net teaching hospitals will be jeopardized, affecting many of the state’s most vulnerable citizens covered by the Medicaid program and served by these hospitals."

Payment for outpatient hospital services (CMS 2213-P)
Loss of federal funds in 2008: None
Over 5 years: None
Provider taxes (CMS 2275-P)
Loss of federal funds in 2008: Not specified
Over 5 years: Not specified
"A reduction or elimination of these assessments would impede access to care by Medicaid recipients in [nursing facilities and intermediate care facilities for the mentally retarded]."

Coverage of rehabilitative services (CMS 2261-P)
Loss of federal funds in 2008: Not specified
Over 5 years: Not specified
"We are unable to adequately project the fiscal impact at this time because of remaining questions about how this regulation will be applied; however, we anticipate a negative impact."

Payments for costs of school administrative and transportation services (CMS 2287-P)
Loss of federal funds in 2008: Not specified
Over 5 years: $56.00 million
"North Carolina Public Schools utilize funds from School Based Administrative Claiming to ensure vital services and equipment for students with disabilities are available."

Targeted case management (CMS-2237-IFC)
Loss of federal funds in 2008: Not specified
Over 5 years: Not specified

On Friday the Senate passed a one month extension of the Higher Education Act. The extension (S. 2733) would give the House and Senate until April 30 to resolve the differences between the comprehensive reauthorizations passed by each chamber. The current extension expires March 31. Both the House and Senate reauthorization bills contain important provisions for people with disabilities, including a new demonstration program to expand access to postsecondary education for students with intellectual disabilities.

ADA Restoration:
The Disability Policy Collaboration, along with others in the disability community, recently met with White House representatives to discuss the ADA Restoration Act. In chorus with the Department of Justice letter to Congress “strongly opposing the ADA,” the White House opposes the ADA Restoration Act as it’s been introduced in the House and suggests a narrow adjustment to include only some of the people with disabilities Congress intended to cover when it passed the ADA in 1990. Their proposal is to protect from workplace discrimination individuals who “mitigate” or manage their disabilities through medication, the use of prosthetics, and other measures. The White House proposal would not protect individuals who cannot mitigate their disabilities and those who are asked to prove to the court’s satisfaction that their disability substantially limits a major life activity. An example of someone still not protected by the White House’s proposed fix: Mr. Littleton, a man with an intellectual disability, who was told it was “unclear if thinking, communicating, and social interaction are major life activities under the ADA.”

Friday, March 7, 2008

Election 2008: Presidential Primary Update

On Tuesday, voters went to the polls in Rhode Island, Texas, Vermont and Ohio to cast their ballots in the Presidential Primary.

Senator John McCain won all of the Republican primaries on Tuesday evening. With his strong showing he secured enough delegates (1,289 recieved - 1,191 needed) to be the presumptive nominee for his parties Presidential ticket.

In the Democratic primary Senator Hillary Clinton won the primaries in Rhode Island, Texas and Ohio. Senator Barack Obama won Vermont. The current delegate count for these two candidates is as follows:

Senator Barack Obama 1,520

Senator Hillary Clinton 1,424

To secure the nomination for the Democratic party the candidate would need to have 2,024 delegates.

What does this mean for North Carolina's primary? It means get ready for the political ad tsunami! The buses are coming and the campaigns are coming. North Carolina polling data is already being discussed by the national political pundits.

Get invovled in the process by registering to vote and by voting. Remember, the North Carolina primary is an open primary. If you are an unaffiliated voter you can participate in the May 6th primary.

And it is not just about the Presidential primary. There are primaries for governor, lietuenant governor, state senate and house seats along with multiple congressional seats. You can access who is running for office in our state by visisting the State Board of Elections website.

Now is the time to make your voices heard. We encourage you to visit the Presidential Candidates web pages and learn where they stand on the important issues of the day.

In the words of Justin Dart "Vote as if your life depends on it."

Read More About the Candidates:
Senator John McCain
Senator Hillary Clinton
Senator Barack Obama

North Carolina State Board of Elections

(Note: The Arc of North Carolina does not endorse any candidate or political party. We do however encourage and support voter participation.)

Disability Policy Seminar Wrap Up-CMS Rules Moratorium

A hot topic during the seminar was the current status of the CMS Rules Moratorium. It is clear that many of these rule changes go further than intended by the Deficit Reduction Act.

Here are the highlights of these rule changes
-6 Regulations - $15 billion in total cuts over the next 5 years
-3 of these regulations severely impact people with developmental disabilities
-Rehabilitative Services
-School-based administration and transportation
-Case Management

These changes again will move more of the financial responsibility to states. North Carolina legislators worked tirelessly last session to try and assist low economic counties with their responsibilities for Medicaid/Medicare.

The Rehabilitative Services Option would see $2.3 billion in cuts over 5 years. This rule change will eliminate day habilitation programs and other Habilitation through this option. These options serve people with developmental and cognitive disabilities. Some of the programs that this option provides are developmental skills training, behavior development, communication development and sensorimotor development.
The Rehabilitation Services rule and the School-based Administration and Transportation rule are both under moratorium until June 30, 2008. The case management rule is not under moratorium and technically went into effect on March 3, 2008.

We will continue to monitor these rule changes. We will be advocating for a six month extension on the moratorium covering the Rehab Option, School Based Administration and Transportation Option. We will also be advocating for the one year moratorium on the Case Management Regulation.

Thursday, March 6, 2008

Julia's Musings: Does It Really Make A Difference?

A friend asked me once “Does all of your advocacy work really make a difference? The constant lobbying for access, for equality, for inclusion for people with disabilities -- are you seeing any changes? Any improvements?”

I ask myself this question a lot, usually when I am driving home after a long day at the General Assembly. I almost always arrive at the answer “yes, it does make a difference,” but you know, it is nice to see some evidence of progress out in the community. It is good to be reminded why we do this work. This weekend I witnessed both the difference advocacy makes and the significant challenges that we continue to face as a community.

On Friday I went to the North Carolina Symphony for an evening of music and relaxation. I sat in the front row, in an accessible seat where I could see every delicate finger position and bow movement of the violinist. There was a time when the only accessible seats in a theatre were in the back, the last row near the wall, almost hidden from view. When we, the disability community, fought for equal access through the Americans with Disabilities Act we were probably not focusing on theatre seating but in this area as in many, our voices made a difference.

After the symphony I decided to take the accessible trolley back to where we had parked our car. While waiting for the trolley I struck up a conversation with a blind man who was waiting with us. We started a discussion about politics. He asked what I did and I told him I was a lobbyist. His first reaction was not favorable; “lobbyist” does not have very favorable connotations. Once we got past the usual lobbyist jokes, this gentleman expressed his concern about the “Left on Red” bill that had been introduced last session. I chuckled to myself; this was a piece of legislation from last session that I and other disability advocates actively worked against. He had heard that it died in committee and was happy someone was working for his interests. Our work made a difference.

When I arrived home that evening I received an email regarding an unfolding situation at the North Carolina School for the Deaf. Student leaders had wanted to hold a protest regarding the unequal education they are receiving and because the school administration does not know how to communicate through sign language. The protest was promptly squashed by the administration and several students were suspended. These student leaders want to exercise their right to speak out on issues that directly affect their lives. Students have been speaking out in our high schools and college campuses for years. The fact that we are still fighting in our state for these basic rights for deaf and hard of hearing students reminds us that there is much more work to be done.

Disability Policy Seminar Wrap Up

Federal Budget/Medicaid

After some technical difficulties, we are ready to give you the update from the Disability Policy Seminar.

This seminar was packed with information. We are going to take the next few days to break down the information based on policy issues presented. Today we are going to take a quick look at the current budget proposal by the Bush administration.

The budget overview is as follows:

-$3.1 Trillion dollars
-$400 billion deficit
-7% increase in defense budget as compared to a 1% increase in domestic spending
-151 Human Service Programs are either eliminated or received budget cuts
-major cuts to Medicare and Medicaid
-Many disability programs are either cut or their appropriations are frozen at FY 2008 levels

-The current budget proposal includes $17.4 billion cuts over five years
-The “savings” will continue the trend of shifting the cost of Medicaid services to the states. Due to the rising cost of health care services more states will be forced to cut benefits, shift costs to beneficiaries or raise taxes.

-President Bush’s current budget proposal includes $178.2 billion in reductions over five years.
-The cuts will jeopardize the health of seniors and people with disabilities. It will force providers to limit the number of beneficiaries and will cause providers to drop out of the program limiting options to beneficiaries.

Our goals and actions:
During the next few weeks and months we will be asking you to call your Senators and Congressional representatives to express your concern for these budget proposals. We will be advocating for increases not cuts to Medicaid and Medicare. We will be advocating for the rejection of any proposal that eliminates programs that assist people with disabilities. We will also be continuing to advocate for a moratorium on CMS rules regarding case management, rehabilitation services and school-based administration and transportation.

Tomorrow we will review the CMS Rules moratorium.

Monday, March 3, 2008

Monday Quick Hits: Hot Policy Topics for This Week

NC Election 2008 Update:
The filing period for this election cycle is now closed. Please go to this link to see who has filed

North Carolina

Monday, March 3, 2008

11 a.m. The House Select Committee to Investigate Alleged Misconduct and Other Matters Included in Indictments Against Representative Thomas E. Wright meets, 544 LOB.

This committee will be hearing testimony from individuals regarding the action of Representative Thomas Wright. The committee could recommend either censure or expulsion of Represenative Wright.

Tuesday, March 4, 2008

11 a.m. The House Select Committee to Investigate Alleged Misconduct and Other Matters Included in Indictments Against Representative Thomas E. Wright meets, 544 LOB.

Wednesday, March 5, 2008

10 a.m. The 21st Century Transportation Prioritization and Efficiency Subcommittee meets, 1027 LB.

This subcommittee is part of the larger 21st Century Transportation committee that has been seated to address the issues of transportation in our state. This committee is charged with prioritizing the multiple needs of our state. The news has been reporting that the larger committee my have a propose stopping the $170 million transfer from the Highway Trust Fund to the General Fund.

10 a.m. The Joint Legislative Study Committee on Public School Funding Formulas meets, 1228 LB.

This committee will be discussing the on going issues with our public school funding formulas. There is no agenda posted at this time but there will probably be a discussion regarding proceeds from the state lottery.

Thursday, March 6, 2008

10 a.m. The Joint Interim Study Committee on Emergency Preparedness and Disaster Management meets, 1228/1327 LB.

There is no agenda available at this time. We will update this committee notice as more information becomes available.

The Disability Policy Seminar Continues!

Good Morning All! Today we will be blogging updates from the seminar. The schedule today is to break into in depth session on federal policy issues that we will be advocating for during the year.

Hot Topic Update: We will be posting an abreviated Hot Policy Topics for this week. It will not include a federal update. Check back for that information later this afternoon.

Sunday, March 2, 2008

Day One Update from the Disability Policy Seminar DC

Over 500 advocates, families, people with disabilities and staff from The Arc and other partners have gathered here to get a first hand look at the future of developmental disability policy.

This afternoon sessions covered multiple federal policy updates. Over the next few weeks we will take an indepth look at these important issues.

Some of the legislation being discussed includes the ADA Restoration Act, changes with Medicaid, Affordable Housing Trust Fund, the current situation with Section 811 housing, and the Higher Education Act.

The last few budgets have shown a significant lack of funding to programs that directly benefit people with disabilities. This is not going to change without your continued advocacy efforts.

Your voice matters.

Live from the Disability Policy Seminar in Washington DC

Good morning everyone. As promised we are live from Washington, DC! The Disability Policy Seminar is up and running.

The first speaker was John Rother the Director of Policy and Strategy AARP. Mr. Rother addressed the current negative environment that we are operating under. As this blog has pointed out previously, the proposed Bush Administration slashed funding for many of our most important programs.

John Rother stated the key to success is to work together. He reminded the attendees that advocacy is a "year round effort, rooted in the personal contact you create with your elected represenatives and thier key staff."

Rother reviewed with the us the importance of telling your elected representatives your personal stories. That these are powerful messages.

John completed his keynote address by articluating what we are all working for "Equality,Opportunity and Community".

Saturday, March 1, 2008

Policy Blog Update: On the Road Again!!!

The Arc of North Carolina Policy Blog will be on the road again! We are heading to Washington, DC to live blog the Disability Policy Collaboration Disability Policy Seminar. We will be bringing you the highlights straight from the conference. We will be live blogging on Sunday and on Monday. So, after you read your Sunday morning paper and have a cup of java check in here for what is up in disability policy!