Georgia council on developmental disabilities making a difference magazine

• People with developmental disabilities must have control over their lives. Service systems must honor individual preferences and offer services designed to achieve personal goals as determined by the person. Valuing each person’s right to self-determination in the design and delivery of services will lead to greater competencies, independence and, consequently, less costly services.

• Employment is a central feature of independence and life in the community. The majority of adults with developmental disabilities are of working age. Employment not only enhances an individual’s sense of self-worth and improves his or her economic well-being, but also frequently reduces service needs and costs – sometimes dramatically. Health care reform must eliminate barriers to employment; i.e., both providing the support services needed to maintain employment and removing the risk of losing eligibility to the very services needed to remain employed.

• Families play a central role in supporting both adults and children with disabilities. Most people with developmental disabilities live with their families well into adulthood, many for their entire lives. Family members provide individuals with developmental disabilities with both a home and support that are critical to leading a full life in the community. To successfully provide support, family members need direct assistance such as information, counseling, training, and someone to coordinate services. Paying family members/relatives to provide care in certain situations should be an element in any reform effort. Family members who provide support, particularly family members who are aging, may themselves have a disability and need their own support services. Policies should allow care-giving agencies to support more than one person with a disability in a household as a sensible and cost-effective strategy to avoid the need for out-of-home care.

• Waiting lists must be addressed. The existence of waiting lists for services is generally considered an anomaly in Medicaid, but is indeed a reality for those who need Medicaid funded home and community-based services. As health care reform will surely seek to address the broader issue of covering the uninsured, it should also seek to ensure that individuals currently on waiting lists for services and receiving little to no publicly funded support can access the array of services they need.

• Services must be coordinated and managed. A coordinated and cost-effective system would provide assistance to explore and identify the types of supports that would be most helpful to the person and their family, to help them access generic services and supports in the community as well as specialized services, to assist the person through transitions in life, and to coordinate with other systems.

• Disability-specific expertise must be retained as part of the service system. While long-term supports can be conceptualized as a generic set of services, the needs of people who rely on those supports are not generic.

• Quality of services and supports are an essential feature of a service system. Assuring health and safety are key features of quality, but quality must go beyond protecting health and safety. It must measure the effectiveness of services in achieving personal outcomes. Quality improvement mechanisms must be designed to ensure that supports and services maximize the achievement of desired outcomes in participants’ lives based on their personal experiences as well as measured results.

• Information technology is an essential element to both delivering services and managing quality. Technology applications can streamline labor-intensive activities of assessing need and risks, service planning and monitoring. Individuals and families could better direct their own services, enabling public managers to monitor utilization and cost. Collection of data on utilization, satisfaction, and personal outcomes would inform policy development and service design.

According to HealthReform.gov, here in Georgia alone 18 percent of citizens are uninsured. Additionally, the number of Georgians with employer-based coverage has dropped from 65 percent to 60 percent from 2000 to 2007. The same Web site also points out that two insurance providers account for 69 percent of those who are insured in the state, with both providers including clauses against insuring pre-existing conditions.

“Americans with disabilities are more likely to be predisposed to certain conditions,” explained Barbara Kornblau, Health Committee Chair of the Justice For All Network. “If you have a disability, you are more likely to not receive the primary care needed due to both lack of accessibility, lack of health coverage and lack of knowledge on the part of the medical community. People with disabilities are likelier to be obese and to have the diseases associated with excess weight including diabetes and high blood pressure. They are also prone to not getting the screenings they need such as mammograms or colorectal screenings. By expanding coverage, these problems are not necessarily going to be entirely eliminated right away, but we’re going to start getting close.”

While debate over health care remains ongoing and far ranging, the issues that affect people with disabilities are being talked about by government officials. Advocacy groups play a vital role in presenting the facts and pushing for reform. As always, however, it’s up to individuals to truly make a difference. Regardless of the outcome of this year’s reforms, the debate won’t end there. Legislators value the input of their constituents.

The often verbalized thought among disability advocates is that once health care reform is complete and signed, Americans will be “stuck” for quite a number of years. That’s why advocates are ensuring that their thoughts are considered by contacting their congressmen.

Georgia’s senators are Sen. Saxby Chambliss (R) and Sen. Johnny Isakson (R), both of whom have expressed concern in moving forward with health care reform as the current proposals stand. “We need meaningful reform, not reform for reform’s sake!” Chambliss stated on his Web site.

In July, Isakson expressed his desire to decrease the financial burden of health care, but also stated that he felt the current proposals would only drive up the cost of insurance, as well as decrease patient choice.

416 Russell Senate Office Building •

Washington, D.C. 20510

202.224.3521 • chambliss.senate.gov

120 Russell Senate Office Building •

Washington, D.C. 20510

202.224.3643 • isakson.senate.gov

To find your district representative, visit www.house.gov and type in your zip code. Your local library will also have your representative’s contact information.
Appreciation Ceremony Awards Advocacy Efforts

By Carly Sharec

“I want to be an advocate in my community,” said council member Lenora Maynard. “I live in

Macon, and the issues I care about the most are housing and transportation.” Indeed, the spirit in the room was of overwhelming relief that another year had passed and that so many strides had been made - and resilience in the face of what still needs to be done in the work of ensuring equality for all.

“Our goals are to create a society based on justice and equality,” stated Eric Jacobson, executive director of GCDD. Jacobson then commended all advocates for their work in ensuring Georgia citizens live in a society like that - and in decreasing the number of people on waiting lists as well as creating community-based support systems. “The worst thing you can do is nothing,” he said.

After recapping events of the year, Jacobson and Tom Seegmueller, chairperson of GCDD, honored outgoing advisory members. “The council has had some incredible members over the years!” Seegmueller stated. Outgoing members this year are Riley Buckmaster, Nicholas Harris and Madeline Ponder.

“The council members have been so warm and kind,” Buckmaster said to the crowd. “I’m going to miss everyone, and will continue to be supportive.

Pat Nobbie, deputy director of GCDD, then listed legislative accomplishments achieved throughout the year - most notably the restructuring of the Georgia Department of Human Resources. “It’s been a very large and difficult job of ‘unbundling’ the department of human resources,” she said. “The reorganization effort - as outlined by House Bill 228 - was not just about moving boxes around on a chart.”

Recognized for his advocacy, Sen. Johnny Grant (R-Milledgeville) was a driving force behind the reorganization of DHR. “Legislative work is not rocket science,” he joked with the crowd. “I’m proud to be in the position I’m in, where I can encourage all voices to be heard by the government.”

Also presented with an award was Rep. Pat Gardner (D-Atlanta), who played a pivotal role in both the reorganization of DHR and the proposed expansion of PeachCare for Kids™. “I do thank you for this distinctive honor ... but I mostly want to thank you for your advocacy,” Gardner said to ceremony attendees.

“The PeachCare for Kids legislation is an effort to allow more families access to health care through the expansion of Medicaid, PeachCare and a third option that would allow families to buy in to PeachCare if they so choose,” Gardner explained. “As private health insurance plans began limiting services for children with disabilities, I had hoped that the more comprehensive Medicaid and PeachCare model would help.”

Following the presentation to the two state legislators, Valerie Suber, public information director for GCDD and organizer of the July event, introduced a video presentation of the 11th annual Disability Day at the Capitol, which was a huge success in early 2009 - both in attendance and in press coverage. “Not enough can be said about the value of earned media and the power of our collaboration between GCDD and the Georgia Radio Reading Service (GaRRS),” Suber emphasized. For the first time, Disability Day was simulcast live to more than 20,000 GaRRS radio and internet listeners. She also commended the enthusiastic show of support of Disability Day emcee, Frank Ski, v-103 FM radio personality, during his radio show the following morning.

“Frank Ski has been doing a lot for the Atlanta community,” Tameeka Hunter, vice-chairperson of GCDD commented. “He encourages [the radio] audience to become aware.”

“The only regret I have is that it took me so long to get involved in this wonderful organization,” Ski said when accepting his award.

The Dalton Daily Citizen of Dalton, GA was also recognized for Outstanding Media professionalism. Accepting the award was Rachel Brown, on behalf of the newspaper’s executive editor,

Jimmy Espy and Victor Miller, city editor. staff writer and author of the article ‘People with disabilities stress need for aid.’ “This was one of my first articles after I started at the paper,” Brown said. “I was so pleased to get out in the community and meet such wonderful people.”

Dave Zilles, treasurer of the State Independent Living Council of Georgia, Inc., was applauded for his work in advocacy. “Dave is the best treasurer,” Pat Puckett, executive director of SILC, stated. “He is always an enthusiastic participant.”

Zilles’ history with advocacy began when his son, now 30, was diagnosed with Friedreich’s Ataxia at the age of 11. “When Jonathon began looking for his own place, I realized how important independence is for young adults with disabilities,” Zilles explained. This is when he learned of the State Independent Living Council.

“I’m so grateful for this honor,” Zilles said to the audience. Zilles has been instrumental in introducing Senate Bill 244 which would modify the Georgia Nurse Practice Act so that certified nursing assistants could complete health maintenance activities normally done by licensed nurses. “The bill passed in the Senate, but not the House,” he explained. “We’ve been working hard since April to develop new legislation for next year.”

The evening culminated in recognizing Jill Alexander as the recipient of the C. Anthony Cunningham Council Member of the Year. “My life has been touched by the people who have the fortitude to overcome obstacles in front of them,” she said, obviously moved to tears. Alexander leads the Ben Hill-Irwin Navigator Team, serves on Ben Hill County’s Project Search team and is a parent trainer for Parent to Parent of Georgia.

“It’s about changing the way things are to the way they’re supposed to be,” Alexander continued, discussing the importance and role of advocacy work.

Those who attended the ceremony also enjoyed the atmosphere of Renaissance Atlanta Downtown Hotel, as well as a silent auction featuring gifts from local shops as well as larger chains. Proceeds from the auction went to benefit People First of Georgia and the Long Road Home planning committee.

Deinstitutionalization

Major Issue as Funding Tightens Up

By Bill Lewis

Those, at least, are the summarized findings of David Mank in an August 2009 article written for the ArcLink. Mank is the Director of the Indiana Institute on Disability and Community and Professor at Indiana University.

The trend toward deinstitutionalization is spreading nationwide. “Over 20 state institutions for people with developmental disabilities have closed since 1995…at least four other states have fewer than 300 people with mental disabilities in state institutions,” Mank reported.

Shelly Simmons, chair of Georgia’s Statewide Independent Living Council, concurs. “We are really trying to push for the Community Choice Act which will allow for the money to follow the person,” she explained. “That’s just a small slice of the CCA. Unfortunately, we still have a waiting list that doesn’t allow enough people to come out of nursing homes or institutions. Seventy-six percent of Medicaid dollars are going toward nursing homes and institutions. If we could get to 50 percent, that would be a plus.”

The Community Choice Act is federal legislation that is for the development of a community-based alternative to nursing homes and institutions. This bill would also plan for the money to follow the person (rather than remain in one certain program and/or in a certain state), and allow people to choose how they receive services.

Robert Stack, president and CEO of Community Options, Inc. has put hard numbers to that equation on a national level. “If they took 50 percent of the people residing in the institutions the average cost savings would be over a billion dollars. And an equal amount would be saved by the states.” Community Options, Inc. is a national organization based in Maryland that embraces the philosophy of self-determination and provides housing, support services and advocacy assistance to empower thousands of people with disabilities.

Andre Cooper of Lilburn is a man who knows first-hand that the system needs changing. Cooper is 40 years old, and was paralyzed in an accident in 2005. He has no family nearby that can help, and currently lives in a nursing home. But, as he points out, there’s no need for him to be there. “I’m capable of staying in a hotel or a house or an apartment. I’m able to do pretty much everything [for myself].”

He knows it costs a great deal of money for him to remain in the nursing home, and he’s also well aware it would cost less for him to be out on his own. “If Medicaid is willing to help me in a nursing home, why can’t they help with an apartment or with some housekeeping?” he asks.

With a dearth of programs in Georgia, it’s difficult for Cooper to find help. “It just seems to me that the less you’re able to take care of yourself, the more they are willing to help,” he says. “If I tell people I can take care of myself, they think I don’t need any programs.”

Refusing to give up, Cooper – along with many others - echoes Simmons’ call to have the money follow the person. The state of Georgia currently has a grant of over $54 million in federal funds for the Money Follows the Person Initiative (MFP), which is helping to shift Medicaid Long-Term Care from its emphasis on institutional care to home and community-based services. The program began on September 1, 2008 and will run through 2011.

Through August 31 (for the 2009 fiscal year), 91 people with developmental disabilities have transitioned into the communities according to Alice Hogan of the department of community health. “An additional 63 people who are either senior adults or have a physical disability or brain injury have transitioned as well,” Hogan confirmed. She continued to explain that they have benchmarks set for each year.

As far as a more permanent solution that lasts beyond 2011, disability advocates remain hopeful. “We’re trying to get a lot of our senators and representatives on board to hopefully make a change. Georgia was the state where the Olmstead Act was enacted, but Georgia’s at the bottom of the list when it comes to actually allowing people to live in a community. We should be leading and in the forefront and we’re actually behind. So we have a lot of catching up to do,” Simmons emphasized.

By Carly Sharec

“It’s broken down into Section 8 Housing Choice and Mainstream vouchers, money for capital improvements and then gets into tenant-based rental assistance and HOME funds,” Barbara Chandler explained. Chandler is the fair housing manager of Metropolitan Boston Housing Partnership in Massachusetts.

• “New” Section 8 – These aren’t technically new. This program has been around for some time, but $30 million is now available for voucher assistance. This will allow for 4,000 vouchers – 3,000 for Housing Choice’ and 1,000 for ‘Mainstream.’ “The Housing Choice vouchers are for anyone,” Chandler said.“ Mainstream vouchers are specifically for taking people out of institutions.”

• Public Housing Authorities - $3 billion in stimulus money is specifically for capital improvements repair work.) “Some of the housing stock owned by PHAs are 50 to 60 years old,” Chandler stated. “This both creates jobs for construction workers, and enables older buildings to be brought up to code and be made more accessible.” • Tenant-Based Rental Assistance and HOME Funds – “These are used for a wide variety of purposes – from affordable single-family homes to creating portable rental properties.”

Additionally, communities seeking these funds must have a consolidated plan detailing what they will be using funding for.

• Low Income Housing Tax Credits– Previously, nonprofits could sell their $1 million in a tax credit to a for-profit as a win-win situation for all involved – however, that system has tanked in the past three years due to the downturn in the housing market. “It’s been proposed that the department of housing and urban development now buy those credits for 85 cents to the dollar,” Chandler said. “As the government is now involved, this is a significant win for disability advocates.” Chandler explained that, as the government now directly purchases the credits, contractors must now adhere to Uniformed Federal

Accessibility Standards.

As of August 2009, the state of Georgia has received approximately $150 million dollars in stimulus funding for housing projects. “Around $130 million is going to help produce affordable rental housing in our state,” explained Don Watt, director of the Office of Special Housing Initiatives at the Georgia Department of Community Affairs. Watt continued to say that the left over approximate $20 million is for the Homeless Prevention and Rapid Re-Housing Program, which helps to provide short-term assistance to households facing homelessness.

“What can really help people with disabilities is our Neighborhood Stabilization Program,” Watt said. “This program can help people who are homeless or in an institution due to a disability afford long term permanent housing support.” This program is expected to be available within one year.

“A lot of this is still floating out there – communities are just now in the beginning stages of getting together their applications for funding,” Chandler said. Chandler said that advocates should show up at various meetings, including at state housing offices, public housing authorities, city halls and planning departments.

“Let officials know how they should be using the money based on the demographics of the area, including the number of people stuck in institutions and the composition of the waiting lists,” Chandler said. “By going to public meetings, your thoughts go into the public record. This helps hold those in power accountable.”
PERSPECTIVES
AARP Fighting For Health Care Reform, Says Premiums Will Climb Higher Without

By Kathy Floyd

Unfortunately, her concern is not uncommon or accidental. Opponents of health care reform have targeted seniors with ads and viral email campaigns. Seniors take it very much to heart because they interact a lot with the health care system and they want to make sure that their Medicare works for them.

AARP is in this fight for health care reform to guarantee Americans a choice of dependable, affordable health insurance – along with a doctor who will work to make the best possible treatment choices. AARP pledges to help you find the facts about what health care reform means for you and your family.

Health care reform will preserve the employer based health care system, meaning an estimated 175 million Americans will continue to get their coverage through their employers.

AARP has not yet endorsed one of the health reform bills, but AARP has worked hard to ensure that both the House and Senate health reform bills include provisions to close the Medicare

Part D “doughnut hole” over time, eliminate Medicare co-payments and deductibles for preventive care like cancer screenings and increase doctors’ reimbursements.

AARP also supports provisions that would stop insurers from denying coverage based on preexisting conditions, ban lifetime insurance benefit caps, and eliminate other discriminatory practices that allow the private insurance market to ration the health care of Americans today.

If these scare tactics win and Congress does not pass comprehensive reform then premiums will only climb higher and higher, benefits will have to be cut, choices will be taken away and the numbers of the uninsured will grow by millions – with those ages 50 to 64 taking the greatest hits.

If we do nothing, the cost of the average employer-sponsored health insurance plan for families will reach an estimated $24,000 by 2016. That’s only seven years from now. At that cost, how many businesses do you think will continue coverage for their employees? And, at that cost, if families had to pay for coverage on their own, at least half of all households would need almost half of their incomes to buy health insurance. How many families do you think will be able to afford it? Could you?

Failing to address the problems in our health system will, over time, become the largest threat to your doctor and your health plan. In fact, the surest way to get rationed and “assembly line” health care in America that nobody wants is if we don’t pass health care reform and keep on our present course.

Older Georgians need health reform now and AARP is working to make sure they get it.
Kathy Floyd is the associate state director for advocacy for AARP Georgia. She currently coordinates AARP’s campaigns in Georgia on issues including health and long term care, economic issues and consumer protection issues. Floyd holds a masters degree in business with a concentration in finance from Georgia State University.