Governor Perdue's Response to Letters on Unlock the Waiting Lists

Dear

Thank you for contacting my office and sharing your thoughts and concerns regarding services for Georgians with disabilities. I am pleased that the voices of people with disabilities, their families and other disability advocates are strong in Georgia, and I want to assure you that we hear those voices.

From listening, we know that Georgians with disabilities want alternatives to institutional care. They want to be active, participating members of their own communities, and they want a fair chance to be a part of Georgia's great workforce.

I am very proud of the support that we have been able to provide for Mental Retardation/ Developmental Disability (MR/DD) services during my administration. In Fiscal Year (FY) 2006, we provided funding for 925 new MR/DD services. The FY 2007 Appropriation Bill included funding for 1,500 new Medicaid Waiver services including funding to allow 150 children, adolescents and adults with DD to transition from institutions to community services. Also, the FY 2007 budget included funds to strengthen our MR/DD system's capacity to meet the increasingly complex needs of our consumer population. On an annual basis, the FY 2007 appropriation will total over $19 million in state dollars, the largest increase in MR/DD funding in Georgia's history.

Developing our state's budget involves making difficult decisions as we must weigh and prioritize the many competing and important needs of the people of our state. However, I want to assure you that I will not forget my respect for and commitment to Georgians with disabilities during this budget cycle.

Again, I want to thank you for sharing your unique prospective. I encourage you to also share your thoughts and concerns with your legislators. The General Assembly has the ultimate responsibility in the allocation of our state's resources. If you need contact information for your members, it is available from your county board of voter registration. As always, I appreciate hearing from you. Please do not hesitate to contact me at any time in the future.


Sincerely,
Sonny Perdue

Texas settles with advocacy group on Unlock the Waiting List

Summary: Pursuant to a settlement between the State and the Arc, State officials will ask lawmakers for money to reduce waiting lists for programs that provide at-home services. VOR will be studying the specifics of this settlement to determine what impact it may have on developmental center residents.

By Corrie MacLaggan
American-Statesman
Wednesday, October 25, 2006

As part of a lawsuit settlement, state officials will ask for more money to stop the growth of waiting lists for state services for people with mental retardation and other disabilities and reduce the number of people on the lists 5 percent to 10 percent a year.

Advocates say the settlement could lead to as many as 60,000 more people getting care at home or in group homes, rather than in institutions: those now on waiting lists plus those who are added to the lists in the next few years.

"This is a real issue of civil rights for individuals with disabilities," said Geoffrey Courtney, general counsel for the Arc of Texas, which is an advocate for people with mental retardation and developmental disabilities. "It enables them to live where they want to live."

But state Rep. Elliott Naishtat, D-Austin, a member of the House Human Services Committee and a supporter of reducing the waiting lists, said the settlement might not mean the issue is resolved. "I'm hopeful that the leadership in the Legislature will do the right thing, but I'm not convinced that it will happen," he said.

If it doesn't, Naishtat said, he expects advocates to file another lawsuit.

Ted Hughes, a spokesman for the Texas Health and Human Services Commission, said his agency has "long been concerned about the (waiting) lists as is evidenced by our ongoing efforts to reduce, and eventually eliminate, them."

The settlement involves a 2002 lawsuit by the Arc of Texas that said the state violated federal law granting options to people with mental retardation and other disabilities to remain at home or in group homes.


The lawsuit involved two programs that provide home-based nursing care, physical therapy, respite care and other services for people with disabilities. There were about 15,000 people on the waiting lists for
Those programs when the lawsuit was filed in 2002. There are now about 45,000.


"This is an issue that could potentially bring tremendous benefit to thousands of families across the state," said Mike Bright, executive director of the Arc of Texas. "Families can have hope that the state of Texas is going to be responding to a critical need as a result of this settlement."

But the people won't get the services if the Legislature, which convenes in January, doesn't approve $254.7 million in state dollars, which will be requested by the Health and Human Services Commission.

Among the plaintiffs in the lawsuit was Jamie Travis, whose daughter, Christy, 27, has severe physical and mental disabilities and requires around-the-clock supervision. Travis, who lives in West Columbia, near Houston, spent nine years on a waiting list for the state program that provides the services.

Now, she has a chance to take a break from full-time caregiving and volunteer at her other children's school. "It's been pretty awesome," said Travis, whose daughter is one of 12,000 Texans moving off of state waiting lists as part of a plan approved by legislators in 2005 that is not directly related to the lawsuit.

But 85,000 elderly Texans and those with disabilities are still on Waiting lists for programs that allow them to live at home or in group homes. The lawsuit aimed to reduce the waiting lists for two of the programs, both of which involved people with disabilities.

Partners in Policymaking Fall 2006

Great news! Voices That Count graduates have been added to our database and will be included in all of our future advocacy efforts and trainings. Voices that Count is a training program geared toward the issues for self advocates and has about 100 graduates. Combining the two will give us access to over 500 trained advocates across the state. Voices and Partners are both sponsored by the Georgia Governor’s Council on Developmental Disabilities. With that in mind, what is your suggestion on what to call this monthly newsletter that would include everyone?

A series of workshops entitled “Conversations that Matter” have been organized across the state by Partners alumni. Forums were held in Athens, Suwannee, and Augusta in October with huge success! All events were attended by legislators and have been well attended by the public. The events were held in key legislative districts, and were centered on informing families about the new MRWP waiver. The series will continue through February. Please volunteer and attend if you live near the events. For more information, go to www.unlockthewaitinglists.com/townhalls.html

To contact the leaders, click on their names below.

December 5 Roswell Jennifer Carroll
January 16 Albany Rosalyn Horne
January 23 Macon Nalini Isaac
February 20 Savannah Mary Poncy

February 7th 2007, we will hold a separate legislative training at the Capitol for a smaller group of advocates. This effort will be held on a different day than Disability Day, which will be February 23rd. If you would like to be a part of this unique training experience, please contact Sarah Pike. Sarah is a PIP graduate and is recruiting participants for us. The training centers around pre-set, one-on-one meetings with legislators to discuss specific issues regarding Unlock the Waiting list and funding for waivers.

ACTION ALERT: Please send your letters to the Governor regarding Unlock. We need 2000 letters to get to him by the end of the year. We are at 69% of that goal.

We have made it very easy at http://www.unlockthewaitinglists.com/actionalert.html

August 2006 Partners in Policymaking

August 2006


Partners Alumni Take the Lead in “Conversations That Matter”

Unlock the Waiting Lists! and the Georgia Department of Human Resources will be hosting Disability Town Hall Meetings across the state this fall and winter. Partners graduates have stepped up and will lead and organize the events. The meetings will focus on learning about the new waiver system, building awareness for Unlock the Waiting Lists!, and in networking with others in communities who care about disability issues. Dr. Steve Hall, Director of the Office of Developmental Disabilities, will our main presenter. The meetings will be held in Gwinnett, Macon, Athens, Savannah, Augusta, North Fulton and Albany. Dates and locations will be finalized soon. There is interest in having an 8th event in Henry county. If you can help, email lpwilson@numail.org If you live in those areas we want you to attend, volunteer the night of the event, or help promote the event in your area. Please contact the following leaders:

Gwinnett -Karen Addams KAddams@aol.com
North Fulton -Jennifer Carroll jenniferofroswell@msn.com
Macon Nalini -Isaac nalini@a1-hosting.com
Albany- Rosalyn Horne rosalyn@swga-easterseals.org
Savannah- Vicki Sumner vsumner@alltel.net
Augusta- Rene Collins augustape@bellsouth.net
Athens- Lynn Jones JLynnpjones@aol.com
Pam Moore psmoore91@yahoo.com


Opportunities to get involved :

Alumni Paula Rafferty Miller needs two grads to advocate for two individuals who are adults with disabilities and have no family members. One is Gwinnett and one is in Covington. This is an excellent opportunity to use your abilities to provide your knowledge of resources and support skills to help. Please contact her by clicking her name above or calling 404-885-1234.

Cares and concerns:

Suzanne Hugueley, class of 2001 has tragically lost her adult son. She has suffered the loss of both of her adult children in the past few years. Please send her a note of encouragement.

If you have a leadership/volunteer opportunity or want to post a concern about your family, please send it to rita@aadd.org

Stories of improving lives span 50 years

Gracie Bonds Staples wrote a wonderful piece today in the Atlanta Journal-Constitution on AADD's recent celebration of 50 years of stories.

One day a group of parents, the story goes, sat around a coffee table and decided the time had come to create opportunities for children with developmental disabilities. They were frustrated. They wanted more than a life of isolation for their children. They wanted them to grow up with family. parents have crossed over. And some are still here in this room with Mary Yoder and the people who've benefited from their actions.

Partners in Policymaking July 2006

At the beginning of July, I was given the opportunity to attend the Toronto Summer Institute on Inclusion, Community and Diversity. Participants came from as far away as Russia, Scotland and China to learn and exchange ideas on what makes a community open to including people with disabilities. It was an opportunity to hear from the top experts in North America on Community Building. Speakers like John McKnight, John O’Brien, Mike Green and Henry Moore who have spent years researching community assets and resources.

As we think about the future of Partners and Partners alumni it reminded me of several things I heard at the Institute: in order to change systems we must engage with each other. With over 400 well trained and informed graduates, the impact you are having in your communities could fill textbooks. Putting a price tag on that work would be impossible.

With that in mind, we have added a new feature to the website to capture the impact of your valuable work. This is an opportunity for you to update us on projects, workgroups, leadership positions, volunteer or paid employment that you are involved in. So, go ahead and brag on yourself! And don’t be modest! So much of what we do goes on under the radar screen, but we care about the influence you are having at the local, state and national levels. Each month, we will send this out as a link to within the newsletter. Please fill it out when you can. Also, if you have a need for volunteers or have a special concern with yourself or a family member that you want to send out to all graduates, send that too, and we will include that too in newsletters.

The link is :
http://www.aadd.org/newsite/programs/alumni.html

Lastly, one of the speakers at the Institute said “ the future is changed one conversation at a time”. We know the knowledge gained from Partners has had a lasting impact on more than just the 400 grads. You all have had those individual conversations, with teachers, administrators, providers, neighbors, friends, children, doctors, and so many others. Thank you for continuing to spread the word on the importance of building communities of inclusion and acceptance. I can’t imagine what Georgia's future would be like without you.

Giving people the choice to move from insitutions is within our State's grasp

This issue is simple, people with disabilities should be given the choice of where they live.

Right now, over 2,000 persons with disabilities are living state institutions and over 5,700 persons with disabilities are living in nursing homes. On June 22, 1999, the United States Supreme Court held in Olmstead v. L.C. that the unnecessary segregation of individuals with disabilities in institutions constitutes discrimination based on disability. However, Georgia still spends only 39% of its Medicaid long-term care dollars on Medicaid home and community based waiver services.

States will get additional help from the federal government to support elderly and disabled Medicaid recipients who wish to live in the community rather than institutions, HHS Secretary Mike Leavitt announced on July 26th.

July 26th CMS's Press Release on MFP

Georgia's "institutional bias" has created real financial disincentives to offer these persons in institutions real choices where they can live.

You can help by adding your organization to the letter written to the Governor below that urges Georgia to adopt a policy that will allow money to follow persons from nursing homes and institutions into the community. You can add your organization to this letter with just one click.

July 26, 2006

Honorable Sonny Perdue
Office of the Governor
State Capitol
Atlanta, GA 30334

Dear Governor Perdue:

On June 22, 1999, the United States Supreme Court held in Olmstead v. L.C. that the unnecessary segregation of individuals with disabilities in institutions constitutes discrimination based on disability. The court ruled that the Americans with Disabilities Act requires states to provide community-based services rather than institutional placement for individuals with disabilities. This historic decision makes attainable a goal long-sought by the disability rights movement, a community first approach to long term care (LTC).

In the July/August issue of the Journal Health Affairs, H. Stephen Kaye’s, professor at the Institute for Health and Aging at the University of California - San Francisco noted that in recent years, there’s been a large and steady increase in the number of home and community based (HCBS) workers — from 264,000 in 1989 to 894,000 in 2004. The aging baby boomer generation will continue to increase demand.

After years of mounting evidence that the long term care system is failing people with disabilities, health policy experts agree, it's time to reduce our dependency on nursing homes and other institutions and implement a community first approach. Both the Olmstead decision and DRA present an opportunity to rebalance Georgia's long term care system. One of the biggest problems with Medicaid-financed long-term care has been its "institutional bias." Medicaid paid mostly for nursing home care and much less for home care over the years. That imbalance has been changing for a decade or more but still exists. In fact, according to CMS, as part of clinical assessments of all residents in Medicare or Medicaid certified nursing homes, 5,774 Georgians expressed a preference to return to the community. During the same year, Georgia spent $1,065,938,986 of its Medicaid long-term care dollars on nursing facility services (nursing homes, ICF/MR institutions, swing beds) (61%). In contrast, Georgia spent $419,092,665 (39%) of its Medicaid long-term care dollars on Medicaid home and community based waiver services (Community Care Services Program, Mental Retardation Waiver, Community Habilitation and Support Services Waiver, Model Waiver, Source Program, Dedicated Case management, and Independent Care Waiver Program).

The undersigned groups want to know which incentives in DRA you plan to utilize to meet Georgia’s commitment to people with disabilities. In particular we're interested in Money Follows the Person (MFP), a policy that Texas successfully implemented. CMS released the Request for Proposal (RFP) for MFP on July 26th and it is our expectation that Georgia will respond to this RFP and begin the long overdue journey to re-balancing the LTC system.

We'd appreciate a response by August 15. To sit on the sidelines would be a disservice to all Georgians. We look forward to working with you to prepare a sound proposal.


Sincerely,

The Undersigned

Why Georgia Needs a New Waiver...

The waiver is ready to be sent by DCH for approval by CMS, but has not been sent yet. However, we have learned that the Governor's office continues to be committed to the principles of the new waiver and is working with CMS (the federal department that oversees the approval process of our new waiver) and other entities to determine how to move forward. To see what the Governor said recently about the waiver and our recent success - read his letter that was published recently in Making a Difference Magazine in the post below.

Also, the memo below is from the Director for the Office of Developmental Disabilities and explains the potential changes that could come from this new waiver...

July 18, 2006

M E M O R A N D U M

TO: People with Developmental Disabilities, Their Providers, and Those That Care So Much About What Happens

FROM: Stephen R. Hall, Director - Office of Developmental Disabilities

SUBJECT: New Waivers for Georgia

For too long Georgians with disabilities have had to fit into an old vehicle knows as the original Medicaid Mental Retardation Waiver Program (MRWP). This vehicle has been modified, patched up, amended, and made more reasonable over the years. Over these same years other states have abandoned their old original waivers, stopped amending them, and have written new Medicaid Waivers for their citizens with developmental disabilities. It is now Georgia’s long overdue turn to send the New Options Waiver and the new Comprehensive Supports Waiver on to Baltimore, Maryland for federal approval.

1. A first ever Community Supports Waiver, called NOW, that will ensure real self-determination through individual budgets.
2. Fair funding with the statewide Supports Intensity Scale Assessment ensuring that the funding is determined based on the person’s exact need.
3. Transportation, dental, behavior, and support coordination services will all be within the new waiver so families can decide, based on their son or daughter’s individual budget, just how much of these new services they want and can afford.
4. Community Guide Services are in the new waivers. These Community Guides will work for and be employed by persons with disabilities and their families.

We have spent eight long months building a new efficient customer-driven system through two new Medicaid Waivers. It is time to say the last rights on the old MRWP and CHSS waivers and welcome the new NOW and COMP waivers. It is time for people with disabilities and their families to live in The New Georgia.

Governor Perdue comments on the proposed new waiver for people with disabilities

We have made great progress over recent years in meeting the needs of Georgians with developmental disabilities and their families including responding to the Olmstead mandate. During this next year we expect 100 people to move from state institutions into the community with the necessary support. This includes 44 children under the age of 21 who have been growing up in state facilities instead of with loving, supportive families.

We have substantially increased the number of Medicaid Waivers that support individuals with developmental disabilities. In 2005, funds were available to support 925 waivers; an unprecedented 1,500 were awarded this year, and we are committed to building on this progress in the future.

Georgia currently has the oldest Medicaid waivers in the country, ones for the most part, require that people fit into existing program. Today, the Department of Human Resources Office of Developmental Disabilities is rewriting the waiver program in order to give more people with developmental disabilities support based on their exact needs. Under the new waivers, people with disabilities such as Down syndrome, cerebral palsy and autism will be able to have more control over the types of home and community-based services they receive and who provides those services.

Instead of investing in outdated facilities, buildings and programs that segregate people with disabilities, Georgia is investing directly in individuals and families – individuals who want employment, housing, membership in civic and community organizations and families who want to keep their young children at home.

As a result of the new waivers, and consumer-driven services, Georgians with developmental disabilities and their families will have greater control and choice. You can expect the State of Georgia to continue its progress toward providing home and community-based services for our citizens with disabilities. And, as Governor, I look forward to our working together to improve the lives of individuals and families.


Sonny Perdue
Governor
Making a Difference Magazine, Summer 2006

Help ensure strong funding for programs like Partners In Policymaking

The National Association of Developmental Disability Councils is working to increasing the federal dollars that support the work of the Governor’s Councils. The Georgia Governor’s Council has a proven track record of supporting life changing programs such as Partners
in Policymaking for so it is important you strongly support for the work that they do by responding to this email.

We need you to contact Senator Johnny Isakson and Senator Saxby Chambliss and encourage them to support increased funding for Councils. The critical date is July 18th.

If you decide to call, ask to speak to the staffer who handles disability issues and tell them that you would,

"ask the Senator to provide $84.5 million to State DD Councils when the Senate Subcommittee marks-up its Labor, HHS, Education spending bill on July 18, 2006"

(202) 224-3643 Isakson: Staffer is Tyler Thompson

(202) 224-3521 Chambliss: Staffer is Steve Rebillot

Let us know automatically that you have helped by making your call.

If you decide to email, you will need to go to their website and cut and paste the text from below into the message box.

Johnny Isakson's Website or Saxby Chambliss' Website

Let us know automatically that you have helped by sending your email.

When the Senate Appropriations Subcommittee on Labor, HHS, Education and Related Agencies marks up its spending bill on July 18, 2006, it is imperative that State and Territorial Councils on Developmental Disabilities (DD) receive adequate funding in FY 2007.

I ask you and the Subcommittee to appropriate $84.5 million to DD Councils under the Developmental Disabilities Assistance and Bill of Rights Act (P.L. 106-402).

Councils struggle not only to meet their obligations under the DD Act, but also to address unmet needs within their States. When the 106th Congress reauthorized the DD Act in 2000, the authority for State Councils on Developmental Disabilities was increased to $76 million and “such sums as necessary” for FY 2001-2007, in recognition of the significant work of these entities within each State and Territory. To date, Councils have not been funded at this authorization level, nor have they received a standard cost of living adjustment in recent appropriations bills.

In FY 2001, 2002 and 2003, some Councils lost up to 20% of their funding as a result of a legislative drafting error when specific “hold harmless” language was inadvertently omitted during the drafting of the last reauthorization of the DD Act in 2000. Further, over the last two fiscal years, Councils have experienced a one- and two-percent rescission that dealt a serious blow to their individual budgets. During this period, our sister agencies authorized by the DD Act – University Centers for Excellence in Developmental Disabilities (UCEDDs) and Protection & Advocacy (P&A) agencies – have received appropriation increases. The intent of the DD Act is that all three entities in each State and Territory work in partnership to produce positive systems change. As Councils fall further behind in funding, they find it increasingly difficult to be full collaborators in these partnerships.

We, ask, therefore, that the Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies provide funding that makes up for these rescissions, as well as a cost of living adjustment.

Despite these cuts, Councils have continued to make a positive impact on the lives of people with developmental disabilities in each State and Territory. Their work has gone well beyond the original investment of Federal dollars. Still, Councils are struggling to fulfill their responsibility of improving the quality of life for individuals with developmental disabilities in this country. Thank you for your continued leadership on behalf of people with developmental disabilities in our State.