President Obama signs Patient Protection and Affordable Care Act into law

By now, you have probably heard a lot about health care reform. The Arc of the United States posted a short summary of the health care legislation on their website. The Patient Protection and Affordable Care Act (H.R.3590) would expand health care coverage to most Americans, preventing insurance companies from excluding people with pre-existing conditions, expanding Medicaid to cover more people, and eliminating caps in private insurance policies.

This legislation would prevent insurance companies from denying coverage, giving individuals with disabilities better access to health care. 

Click here to read more. OpenCongress.org also has more detailed information regarding the bill and an official summary covering each section.

The Arc of the Mid-South in Nashville

Last Wednesday, The Arc of the Mid-South joined other disability organizations and self-advocates from west Tennessee for Disability Days on the Hill 2010. Executive Director, Carlene Leaper, along with thirty-eight parents, self-advocates, and staff took a bus to the Capitol in Nashville and had the opportunity to speak with legislators about issues facing the disability community.

This year, we focused on the potential budget cuts facing TennCare and cuts in funding for community-based health services provided by DIDS. Each senator and representative that we spoke with was very receptive to what we had to say and offered their support for the disability community when the budget is presented to the House and Senate.

We also had an opportunity to attend a press conference led by Carol Westlake of the Tennessee Disability Coalition and Andy Imparato, president of AAPD, demonstrating solidarity in our concerns for the harmful effects that TennCare cuts will have on people with disabilities.

As always, we encourage you to call, email, or write your legislators and let your voice be heard. Visit the Tennessee General Assembly website to find your legislator.

Click here for a WSMV-TV video news story on the possible TennCare cuts.

Action Alert--Bill allows isolation for Special Education students

Wednesday, February 10, legislation may be heard that would allow students receiving Special Education services to be locked in isolation.

The Tennessee Disability Coaltion sums up some of the key points in this bill:

• This bill would make it legal to lock a special education student – of any age or diagnosis – in isolation at risk to their health and safety

• Contradicts health and safety codes that prohibit locking students in an educational facility without a way out

• A child could be locked in an isolation room without parental notification

• There is no requirement in the bill that locked isolation only be used in an emergency situations

• With a locked door, a student is trapped with no mechanism to call for help if they are forgotten – even for a minute or two – by school personnel

• Places all special education students at risk of locked isolation

If your representative sits on the Education K-12 Subcommittee, we encourage you to send him or her an email or call to oppose House Bill 2538.

Bill Sponsors of HB 2538/SB 2517
Rep. Glen Casada R-63 Parts of Williamson Co. (615) 741-4389
Sen. Jack Johnson R-23 Williamson and parts of Davidson (615) 741-2495

House Education, K-12 Subcommittee
*represents part of a county
Les Winningham rep.leslie.winningham@capitol.tn.gov , Chair
D-38
Clay, Jackson, Picket, Scott and Anderson*
(423) 286-9090

Ron Lollar rep.ron.lollar@capitol.tn.gov , Vice-Chair
R-99
Shelby*
(615) 741-7084

Judy Barker rep.judy.barker@capitol.tn.gov 
D-77
Obion, Lake, Dyer*
(615) 741-0718

Tommie Brown rep.tommie.brown@capitol.tn.gov  
D-28
Hamilton*
(615) 741-4374

Bill Dunn rep.bill.dunn@capitol.tn.gov  
R-16
Knox*
(615) 741-1721

Beth Harwell rep.beth.harwell@capitol.tn.gov 
R-56
Davidson*
(615) 741-0709

David Hawk rep.david.hawk@capitol.tn.gov
R-5
Unicoi, Greene*
(615) 741-7482

Joey Hensley rep.joey.hensley@capitol.tn.gov 
R-70
Lawrence, Lewis, Wayne*
(615) 741-7476

Ulysses Jones rep.ulysses.jones@capitol.tn.gov 
D-98
Shelby*
(615) 741-4575

Mark Maddox rep.mark.maddox@capitol.tn.gov 
D-76
Weakly, Carroll*
(615) 741-7847

Johnnie Turner rep.johnnie.turner@capitol.tn.gov 
D-85
Shelby*
(615) 741-6954

Terri Lynn Weaver rep.terri.lynn.weaver@capitol.tn.gov  
R-40
DeKalb, Smith, Macon
(615) 741-2192

Temple Grandin film

 

Trailer

This weekend, HBO is premiering Temple Grandin, the true story of a woman diagnosed with autism in the 1950s, at a time when many people with disabilities were put in institutions. The film stars Claire Danes as Grandin, and shows her development as someone who uses her unique talents as well as her mother's and teachers' encouraging mentorship to overcome educational and social obstacles.

The film chronicles Grandin's intial interest and successes in understanding animal behavior, which will ultimately revolutionize the cattle industry. Her story paves the way for Grandin to become one of the world's most well known lecturers and spokespersons for autism.

To learn more about Dr. Temple Grandin, you can visit her site here. For more information on the film, click here.

Temple Grandin premieres tomorrow, February 6 at 7:00pm Central Time.

Good news for Tennessee families!

The Tennessee Disability Coalition has reported that the Family Support Program will be funded for two more years! The program was in risk of being eliminated, and through numerous petitions, letters, and phone calls from self-advocates, families, and supporters, our voice was heard and it made a difference. The Tennessee Family Support Program is the only program that provides funding to individuals regardless of their diagnosis, income, or age. It's still early in the year and anything can happen, but this is great news.

Disability Days on the Hill 2010

 

We're headed to Nashville Wednesday, February 24 for west Tennessee's Disability Day on the Hill! Disability organizations throughout Tennessee will be meeting at the Capitol to advocate for the needs of individuals with disabilities and their families. With your help we can ensure that every legislator gets to hear from a constituent with a disability or a family member.

Accessible bus transportation is available. There is still time to register if you would like to attend! Contact Megan Long at mlong@arcmidsouth.net or 901-507-8568.

Let's make a difference!

Protecting students against abuse in schools

COPAA (Council of Parent Attorneys and Advocates, Inc.) posted their position on the congressional bills H.R. 4247 and S. 2860 regarding the use of seclusion and physical restraint in schools. It gives a great overview of the bills that were introduced to Congress last month.

This legislation would provide students with and without disabilities protection against abuse in schools.

It is well-documented that the use of restraint and seclusion in schools is neither effective nor therapeutic. Instead, it is mentally and physically abusive. Despite this, thousands of cases of restraint and seclusion occur in our nation’s schools annually, often with tragic results, including the death of children.
For years, schools’ use of restraint, seclusion, and aversive interventions was unpublicized and little-known, despite their widespread use. However, recent reports by COPAA [1] and the National Disability Rights Network (NDRN)[2], and Congressional testimony by the U.S. Government Accountability Office [3] have served to shine a spotlight on these abusive practices. In their findings sections, H.R. 4247 and S. 2860 recognize that "physical restraint and seclusion have resulted in physical injury, psychological trauma, and death to children in public and private schools," as described in these reports. The reports also note that existing laws alone have not protected students against such abuse and injury, though many do offer important protections. The bills, therefore, include a critically important savings clause that preserves existing additional rights under state and federal law.
COPAA is a national organization of parents, advocates and attorneys dedicated to protecting the civil and educational rights of children with disabilities, whose members represent families in 48 States and the District of Columbia. As such, COPAA believes this legislation is a crucial first step toward the ultimate goals of eliminating abuse and restraint in schools, limiting use of restraint and seclusion to true emergencies, and assuring that children who exhibit challenging behaviors obtain appropriate, safe, and effective educational services.

You can read more here.

Family Support Program is in jeopardy

Save the Family Support Program!

As many of you know, Tennessee's Family Support Program is at great risk of being eliminated! We want to keep you informed of the latest developments so that you can get involved. Here is what’s happening across the state:

Monthly Conference Calls:
Date: November 18, 2009, 3:00pm - 4:00pm Eastern/2:00pm - 3:00pm CST
What is Family Support?
Easter Seals, in collaboration with Self Advocates Becoming Empowered (SABE), is hosting a series of monthly conference calls on Family Support. Each call is designed for families of children with developmental disabilities and self-advocates to learn more about family support options, as well as how to advocate for service improvements. This is the first in a series of family support conference calls; additional calls will be held on the third Wednesday of each month. For call-in information, please register at http://www.directeventreg.com/registration/event/40554288.

MESSAGE FROM TN FAMILY SUPPORT ALLIANCE:
Governor Bredesen is holding public departmental budget hearings this week. The Division of Intellectual Disability Services, which oversees the Family Support Program is scheduled to present their budget recommendations from 1:00pm to 1:45pm on Thursday, November 19. The hearing will be held in the State Capitol Building.

As of today, the State of Tennessee anticipates a budget shortfall in the range of $1.5 Billion dollars in the coming fiscal year.  This represents a 9.4% cut from the $26.3 Billion budget Governor Bredesen presented to the legislature last year.

We now have authoritative documentation that the Division plans to submit a budget of only $202,100 to the Governor for the entire statewide Family Support Program. Last year, the budget for the program started at $7.67M dollars.  During the year, the program was cut by $1M. This appropriation means that the Family Support program will be cut by 97% if the Division’s budget is allowed to stand.

The Tennessee Family Support Program serves citizens with severe disabilities, many of whom have few, if any, other resources. At present, it is the only program that serves “gap” populations, including persons with developmental disabilities other than intellectual disabilities, as well as certain middle income families who do not qualify for government supports even though these households are bearing extreme disability-related costs.

The Governor’s Budget hearings are open to the public. Please attend. Write Governor Bredsen and ask him to include the Tennessee Family Support Program in his budget when he presents it to the State Legislature. Visit and write your local legislators before they return for the January session and let them know how much the Family Support program means to you personally.  Ask them to preserve and protect funding for the Tennessee Family Support Program.

If you cannot attend, you can watch the hearing online at http://www.tennesseeanytime.org/gov/budget.

WSMV-TV reports on budget worries for Tennessee Family Support Program

About a month ago, we blogged about the possible elimination of the Tennnessee Family Support Program. Fortunately, the issue is getting some media attention. WSMV-TV of Nashville reported on the state's budget crisis and what it could mean for funding for people with severe disabilities. Mary Hildebrand of The Arc of Davidson County speaks in the video about how the funding cuts would affect the over 4,300 families who are served by the program. The video also features a family (Courtney Weaver and her mother, Theresa Smith) who benefits from the funds, putting a face to this critical issue.

You can learn more about the Family Support Program here.

Also, if you haven't already, join the Tennessee Family Support Alliance which brings awareness to the Family Support crisis and provides updates as well as information about legislators you can contact in your area.

Help Save Tennessee's Family Support Program!

We need to hear your story!!

As many of you know, Tennessee's Family Support Program at great risk of being eliminated!

According to the TN Family Support Alliance, "In 2009, the Division announced a $1 Million reduction to the program... The notification of reduction in funding was accompanied by a letter indicating that 2009-10 funding primarily would come from federal stimulus dollars and that barring additional federal funds, the program would be effectively eliminated in the 2010-11 state fiscal year."

According to annual consumer satisfaction surveys that are maintained by the state, the Family Support program is widely recognized as one of the most successful services ever to be operated in Tennessee. Currently, the Family Support program serves around 4,300 families and more than 6,000 families of persons with severe disabilities are on the statewide waiting list.

In order to effectively advocate that this program be maintained, we need to hear from the families that these cuts will affect. Please email us your story about how the loss of this program will impact your family. We will be collaborating with families and other agencies in the coming month to determine the best plan of action. Your stories can be sent to Megan Long at mlong@arcmidsouth.net.

Additionally, we want to invite you to stop by our office and sign the petition, urging our legislators to save this vital program. You can also download the petition and help us gather signatures from friends, family members, churches, and other support networks. All petitions must contain original signatures and need to be returned to The Arc of the Mid-South by September 30th. Your signed petitions can be emailed to Megan Long, faxed to (901) 327-1197, or mailed or delivered to 3485 Poplar Avenue, Suite 210, Memphis, TN 38111.

Don't forget to attend the Shelby & Fayette County Family Support Program Meeting at Memphis Center for Independent Living (1633 Madison, Memphis) on Saturday, October 3rd at 11:00am for more updates on this issue.

We look forward to hearing from you!

Eunice Kennedy Shriver (1921-2009)

Picture from SpecialOlympics.org
We are all saddened by the death of Eunice Kennedy Shriver, founder of the Special Olympics and champion for those individuals with disabilities. Inspired by her sister Rosemary's disability, Shriver held "Camp Shriver" in 1963. Her hands-on approach to the camp led her to realize that the children with disabilities were much more capable than many believed, and she organized the first Special Olympics in Chicago in 1968. Throughout her long and fruitful life, she earned many awards, including the nation's highest civilian award, the Presidential Medal of Freedom.

Carlene Leaper, Executive Director at The Arc of the Mid-South says Shriver was an important figure in the effort for equality.

"It's a sad day for not just the disability community, but for the world as well," says Leaper. "Mrs. Shriver's efforts helped paved the way for organizations like The Arc to do what we do, which is empowering individuals with disabilities to acheive their full potential in life. She was a pioneer in the field and she will be dearly missed."

While Shriver is gone, her legacy will last for generations to come.

The Association of University Centers on Disabilities (AUCD) is looking for personal stories

The Association of University Centers on Disabilities (AUCD) is working with other disability organizations to ensure that long-term services and supports are included in health care reform. One important bill we are advocating for is the Community Choice Act. This would require states to provide Medicaid community-based personal attendant services and supports. It would help correct the institutional bias. It would provide Americans with an equal choice of community-based services. It would also help address waiting lists.

Senator Tom Harkin’s office has asked for assistance. They need personal stories that can help make the case of why long-term services and the Community Choice Act should be included in health care reform. They especially would like stories from the developmental disabilities community.

• Are you caring for a family member or family members who need long-term services?


• Are you an aging caregiver concerned about future services?


• Do you have out-of-pocket expenses for long-term services that are difficult for your family?


• Has providing care impacted your employment?


• Are you on a waiting list for Medicaid home and community-based long-term services?


• How long have you been waiting?


• How long is the waiting list?


• Have you ever had to move or become poor to get the long-term services you need?


• Have you experienced the “institutional bias” in Medicaid?


• Live or at one time lived in an institution or nursing home?


• Only had a choice of nursing home of institutional placement?

There is no set format, but try to keep the stories short (about a page is good). Details are good. Make sure to include your name and what state you live in. They should make the case of why long-term services and the Community Choice Act should be part of health care reform.

We did something similar to this during passage of the Family Opportunity Act. We got a lot of great stories that helped Senator Kennedy’s staff. Please share your stories and help pass on through your Consumer Advisory Councils. Health care reform is moving very quickly so we need stories as soon as possible. Send them to Joe Caldwell at AUCD.