Letter from Extraordinary Mom

Happy President's Day! 

I just got this email over the weekend from a parent who sent out emails in response to the action alert on Friday. I changed the city she lives in and her name to Extraordinary Mom. I will say that I  know her personally, and I promise she is!

Thanks for understanding that we need to move to a new level of advocacy and ask for increased revenue to fund services. The short personal story along with an action to take makes this a effective letter.

Have a great week. See you all Thursday at Disability Day at the Capitol. 


Best, 
Rita

State Representative, District 46

340 State Capitol Building

Atlanta, Georgia 30334

Dear Representative Jones:

My 23 year old son has Autism. I am 53 years old and don’t know what will happen to him after my husband and I are gone. I’ve been told over and over since he was just a little boy that there just isn’t enough funding available. All the while the waiting list for services continues to grow and grow. When will it by my son’s turn?

For my son and for thousands of others across Georgia, it is critical for the state to increase revenue in order to provide needed services for individuals with developmental disabilities. By updating our out dated tax system, please look for ways to increase revenues during this legislative session to fund individuals on the waiting list.

Please help us to help our kids. Thank you for any support that you can give us.

Sincerely,

Extraordinary Mom
Near Savannah, GA 

I recently received this from a dear advocate in Carrollton;

My daughter is now 39 yrs. old, and even before her birth I was an advocate for disabilities as a speech therapist/audiologist.  It seems that we parents and those who work “in the system” are the only ones who truly “care” about the current and future care of our family members.  I have sought help from politicians, some of whom have had children with disabilities, and yet our needs always come up short.  What more can we do??  I am now in my 70s and have little energy because of my own health problems.  But for the rest of my life I will continue to do all I can for those like my daughter.

The facts: There are over 17,000 aging family members in Georgia caring for an individual with developmental disabilities. Our waiting list continues to grow every year by at least 700-900 due to students graduating high school. The state revenues are simply not enough to handle the demand of our families.

We need to ask our legislators to update our out of date tax system to better protect us from economic downturns and bring more revenue into our state.  The following legislators are deciding on tax reform and recommendations from a Tax Council that was formed last year and need to hear from our families the following message:

Cut and paste the paragraph below and the bolded sentence, sign your name and write a few personal sentences like our advocate did above:

For my child and for thousands of others across Georgia, it is critical for the state to increase revenue in order to provide needed services for individuals with developmental disabilities. By updating our out dated tax system, please look for ways to increase revenues   during this legislative session to fund individuals on the waiting list.

For solutions that take a balanced approach, review 2020 Georgia’s recommendations.

Send to the following legislators asap:

 The Honorable Larry O'Neal, State Representative, District 146: 

larry.oneal@house.ga.gov,

The Honorable Stacey Abrams, State Representative, District 84: stacey.abrams@house.ga.gov,

The Honorable Jan Jones, State Representative, District 46: 

jan.jones@house.ga.gov,

 The Honorable Steve Thompson, State Senator, District 33: 

steve.thompson@senate.ga.gov,

Advocacy matters.  Thank you,

Rita Young

2011 Partners in Policymaking

Partners in Policymaking is back! The deadline to apply is March 10th. 

Special Tax Reform Council Report

Yesterday, members of the Special Tax Reform Council presented their recommendations to a group of state senators and representatives on how our state tax system needs to made more effective and efficient. At a time when there are no new dollars for community supports until the end of June, and then only 100 budgeted for next year, we need to care about what legislators ultimately decide about new revenue for the state. Remember, there are nearly 6,000 people waiting for services.  2020 Georgia just released one if its 20 Choices for Georgia’s Future and highlighted the lack of funding for community waivers.

With so many worthy causes to put your time and energy around, we hope that you continue to support the common vision for people with developmental disabilities to have the supports that they need to in order to lead meaningful lives by staying connected and involved in your community and in statewide advocacy efforts.

One very specific way you can do that is to develop your own leadership skills through Partners in Policymaking. Partners is a leadership development program for parents of children with developmental disabilities and self advocates and has over 500 graduates statewide. I am a graduate of Partners, and I can testify that it set the course for the work that I do everyday. Stay tuned for more news and details later this week. 

Jewish Disabilities Awareness Month

There are no boundaries around spirituality.

Temple Kehillat Chaim, a Reform Jewish synagogue in Roswell, will inspire, motivate and educate the community with a special Sabbath worship service on Friday, February 25th at 7:30. February 2011 is the third annual International Jewish Disability Awareness Month. Synagogues around the world are highlighting their mission to break down physical, communication, and attitudinal barriers, and educate our communities on what accessibility and inclusion really mean.

Stacey Ramirez, Director of Individual and Family Supports for the Center for Leadership in Disability at Georgia State University in Atlanta will be this year’s invited guest speaker. Ms. Ramirez will share her experience in facilitating Person Centered Planning, a unique process that empowers people with and without disabilities. Person Centered Planning focuses on the individual and his needs by putting the person in
charge of defining the direction for his life, not on the systems that may or may not be available to serve him. This ultimately leads to greater inclusion as a valued member of both community and society and heightened personal satisfaction.

Person Centered Planning involves the development of a “toolbox” of methods and resources that enables a person at any age of life – from childhood to adulthood to choose his own pathways to success; the planners simply help him determine where he wants to go and how best to get there. The service will speak to the importance of community supporting individuals with disabilities while cultivating spirituality.

Where: Temple Kehillat Chaim
1145 Green Street Roswell, Ga. 30075
When: Friday, February 25, 2011 7:30 p.m.
Phone: 770 641-8630

Recent Advocacy Alert

Dear Advocates,

If you received a recent advocacy alert this afternoon regarding SB22, please disregard. We apparently had some technical difficulties with our software, and the message you received concerning a bill on transportation was from a previous legislative session. Excuse the confusion.We are looking into how and why that error occurred.

Sincerely, Rita

Captiol Update:

Yesterday, the Subcommittee on Human Resources in the GA House met to hear public testimony on the closure of hospitals across the state that serves individuals with mental illness and developmental disabilities. Twenty-two people gave testimony to legislators that lasted several hours. Kudos to Pat Nobbie from Georgia Council on Developmental Disabilities for telling legislators that we need 1500 waiver services for DD when there are only 100 in the budget. Also Josh Norris from Georgia Advocacy did a great job in stressing the need for a plan of action on how Georgia needs to support folks coming out of hospitals as well as fielding difficult questions from legislators on issues such as the future of Central State hospital in Milledgeville. Linda Wilson, Partner graduate and AADD Board President also stressed the need for family support services to be funded in the budget to help families keep their loved ones at home or in the community. The common thread in most of the testimonies was the need to build up provider capacity quickly to insure smooth transition from hospital placement to the community, and provide adequate funding to support the Behavioral Health and Developmental Disabilities infrastructure as they change in culture and the way they provide services to individuals with Mental Health and DD.

NOW & COMP Waiver Training Series

The Department of Behavioral Health and Developmental Disabilities (DBHDD) Division of Developmental Disabilities is pleased to announce the FY11 DD NOW and COMP Waiver Series - Self Directed Services Training.

This training series will provide an interactive, hands-on and problem-solving approach to understanding self directed waiver services.  As a Participant/Representative who chose to self-direct your waiver services and supports, you are encouraged to attend one of these sessions to enhance your knowledge and assist you in using these services effectively and efficiently. 

These sessions will be conducted in multiple locations throughout the state in February - April 2011.  Please see the attached announcement for details about the training and how to register.  Registration is quick & easy online at http://www.cviog.uga.edu/dbhdd/pdt.php.

This announcement, and all DD training announcements, will be posted on the Department's training website at http://dbhdd.georgia.gov/training.  Click on the link “Developmental Disabilities Training Announcements”.

I look forward to seeing you at one of the training sessions.  Feel free to share this announcement with others you know who self-direct their DD waiver services and supports.

Advocacy Update

Monday morning and good news just don’t seem to go together, but they do today. Because of Federal regulations, Department of Community Health cannot require co-payments for recipients of the Katie Beckett program. This is great news for the roughly 2,000 families who receive services for their children with disabilities.

With agencies, the Governor, and legislators looking for potential cuts and the needs of people with disabilities continuing to increase, the real question becomes, in a time of economic struggle, how do we find revenue for services for our citizens with disabilities?

Last year, a Special Council on Tax Reform and Fairness was formed to study and make recommendations to Georgia’s current tax structure. They released a report several weeks ago, and it looks like the recommendations would overall include transitioning Georgia’s tax base from relying on income tax to consumption taxes. The council recommends the return of sales taxes levied on food, requiring sales tax on personal and household services, and lowering the personal income tax to 4% over the next few years. AADD is a part of a broad alliance of organizations that will encourage legislators to take a balanced approach to our state’s fiscal challenges. 2020 Georgia is a statewide coalition of over 75 agencies and community leaders that believe that there is a gap in the needs of Georgians in healthcare, education and other services and that spending cuts alone will not take care of meeting those needs. A balanced practical approach includes finding efficiencies and revenue. Tax Council’s Full Report.

Gracewood Tries to Ease Fears

A meeting Tuesday night between state officials and patients’ families and employees of the Gracewood campus of East Central Regional Hospital could be summed up like this: “Gracewood will still be here,” said Beverly Rollins, the executive director of the Division of Developmental Disabilities for the Georgia Department of Behavioral Health and Developmental Disabilities.

“That’s not what we’re hearing,” muttered Dale Beasley, whose daughter has been at Gracewood for 40 years.

The meeting, called by state Sen. Hardie Davis, D-Augusta, and the Augusta delegation, was to explain plans to move more Gracewood patients into the community. The department reached a settlement in October with the U.S. Department of Justice over conditions in the state’s mental hospital system, which includes Gracewood.It calls for the state to move 150 patients a year out of Gracewood and into the community, “provided such placement is consistent with the individual’s informed choice,” according to the settlement agreement.

That could prove difficult to comply with in the case of Gracewood patients such as Erica Knighton, who doesn’t speak, suffers from seizures and has the functional capacity of “an infant,” said her mother, Ann, the president of the East Central Georgia Family Council.Yet the family has been told that Erica pointed to a picture of a house and said she wanted to there, a story her mother finds ridiculous, and a staff member put a pen in Erica’s hand and helped her sign some papers.

“They’re (trying) to railroad people out,” Knighton said. Rollins repeatedly stressed that it will be the family’s choice. “We won’t violate their choice,” she said. The settlement agreement calls for offering 150 patients a year the chance to move out and receive services in the community. By 2015, any remaining patients “shall be served in the most integrated setting appropriate to their needs. ”The families say it really means the closing of Gracewood. Rollins said that’s not the case. “The thing about Gracewood is that there is always going to be individuals who will need that level of care,” she said. “So Gracewood will need to be around for that. ”Department spokesman Tom Wilson said that as other facilities close, their remaining patients likely will end up at Gracewood.

The state is attempting to comply with the 1999 Olmstead decision, in which the U.S. Supreme Court ruled that the Americans with Disabilities Act required Georgia and other states to serve people in state institutions in the least restrictive setting whenever possible, including providing community services. Beasley said she struggled with the decision to put her daughter in an institution, and the only appropriate place for her daughter is at Gracewood. “If my daughter could stay in a community setting, why would I have ever let her go to a state institution?” she said.

Gracewood Tries to Ease Fears, Integration Worries Families
By: Jeff Corwin
The Augusta Chronicle
January 18th, 2011