Wednesday, September 26, 2007

Partner graduate wins Act of Courage award!

Nandi Isaac, graduate of class of 2005, will be recognized by the Tubman African American Museum. What a great honor for Nandi !

The Tubman African American Museum created the “Act of Courage” Awards to recognize Georgia residents of all ages and races who exemplify the word courage. Inspired by Harriet Tubman’s legacy, we see courage as “standing up and taking action during challenging circumstances to make a difference for yourself and the lives of others.” This award unifies us all by raising awareness of those who are making a difference.

The awards ceremony will be held on October 9th, 2007 at The Carter Center in Atlanta, Georgia.

Click to read Nandi's story.

Monday, September 24, 2007

Community Choice hearing on September 25th - Send your testimony TODAY!

Any testimony you want to send needs to be sent now! The hearing is Tuesday. Let the Senate Finance Committee know why you support the Community Choice Act (S. 799) Voice of the Retarded is sending lots of pro-institution letters and testimony and the Committee needs to hear from CCA Supporters too.

Though only invited people can testify orally to the committee, anyone can submit written testimony. If people want to send written testimony to the committee, here is the address:

susan_douglas@finance-dem.senate.gov

If you do send written testimony, we would appreciate your sending ADAPT a copy so we can use it - if needed - in the future. (It's hard to get ahold of this kind of written testimony later.) You can email it to ADAPT, or send a hard copy to: ADAPT of TX, 1640-A East 2nd ST, Suite 100 Austin, TX 78702 (note NEW ADDRESS) or fax to: 512/442-0522.

LARGEST FEDERAL DISABILITY PROGRAMS HAVE NOT KEPT UP WITH SOCIETAL CHANGES IN THE UNITED STATES,

A NEW REPORT FROM THE U.S. GOVERNMENT ACCOUNTABILITY OFFICE SAYS

The U.S. Government Accountability Office (GAO) gathered advocacy groups, academia, federal agencies, and researchers for a forum to discuss what's working well in over 200 federal disability programs in the United States, what needs to be improved, and how to strengthen partnerships and modernize programs. A new report titled Modernizing Federal Disability Policy published by GAO articulates the key concerns expressed in this forum. Some of the steps identified to enhance federal programs include talking with people receiving disability services to find out what additional services they need to succeed; developing a definition of disability and standard language that could be used across programs; and providing services to youth.

Click to read the report: Modernizing Disability Policy.

Longer life for mentally disabled brings complications

Chicago Tribune

September 23, 2007

Josephine Grabowski did not expect, at age 86, to be pulling herself precariously out of her wheelchair to change her son's soiled bedsheets.

In fact, she did not expect her son Frankie, now 48, to be alive at all. When her son was born, Grabowski's doctor informed her that "Mongoloid" children like hers did not live past their teens.

But as medicine advanced and home care improved, thousands of developmentally disabled baby boomers like Frankie Grabowski are outliving their elderly parents for the first time. The life expectancy of a Down syndrome child in the 1930s was less than 10 years. Today, it is nearly 60.

Nationally, there are 682,000 people 60 and older with developmental disabilities, and that is expected to double to 1.3 million by 2030, according to researchers at the University of Illinois-Chicago.

"It's an incredibly bleak picture," said Charlotte Cronin, executive director of the Family Support Network of Illinois, a statewide grass-roots advocacy group. "This person with significant disabilities - all they know is mom or dad. That's all they've ever known. And they can't talk, or the information they share makes no sense" to others.

For this reason, Josephine Grabowski's biggest hope today is that she outlives her son - a hope that teetered last week as she entered a hospital, suffering a bad reaction to antibiotics she took for a bladder infection. She predicts her son will fall into deep despair if she dies before he does.

"I know no matter how good the nursing home is, they won't do for him like I do," she said in a voice congested and weak from fighting a cold. "He will die from a broken heart and loneliness."

Although the doctor recommended the Grabowskis put their son into an institution, she and her late husband, Jerome, decided they would care for him in their modest home in a Chicago suburb. Now, Josephine Grabowski, with severe arthritis, congestive heart failure and painful fluid buildup in her legs, is still her son's primary caretaker.

"We are looking at a terrible financial hardship for parents," said Dr. David Braddock, Coleman-Turner chair and professor in psychiatry at the University of Colorado School of Medicine. He was the founding head of the Department of Disability and Human Development at the University of Illinois at Chicago. "It's a very daunting thing - to have to be a caretaker when you yourself might need support.

"This is a challenge that is going to grow for older caretakers in our society as our nation ages. It's going to affect virtually all developed nations in the world."

But Josephine Grabowski said she does not regret deciding to care for Frankie herself.

Their home is dotted with lacy curtains and family portraits that point to happier times, including a shot of Frankie beaming in a suit and tie after his First Communion.

In his those days, Frankie would spend hours holding a battery-powered radio to his ear, set to a station as fond of Lawrence Welk as he was. He would giggle as he chased after plastic balls in the house. On sunny days, he would sit on the front steps and wave to neighbors.

Several afternoons each week, mother and son would drive to a McDonald's for a hamburger and fries drenched in ketchup. Frankie held court in the restaurant, shaking hands with staff and customers. At the grocery store, he would try to hug and kiss the cashiers in the check-out line.

When he napped during the day, his mother would head to her garden, where she would lose herself as she pulled weeds and tended her flowers.

"I was just a housewife," she said. "I took care of my family."

In a similar spirit, Terri Coglianese, 70, has cared for her younger brother, Charles "Titos" Sanchez, 69, ever since their parents died in the early 1960s. Sanchez, too, has Down syndrome.

"We would never put him in an institution," she said, tearing up. "He's my baby."

But his care became increasingly complicated over the years, first with the loss of sight in one eye, then after he fractured his hip in December. Sanchez must now wear diapers, he was no teeth and he is terrified of getting out of bed.

Family members say he "understands everything," but his communication skills are limited. It took his loved ones a week to realize he had a fracture because Sanchez never complained about the pain. He simply refused to walk.

For now, Sanchez remains bedridden in a nursing home in Park Ridge. Coglianese, who works full-time as a human resources administrator, plans to take him home once he regains his mobility.

"You are going to walk, right Titos?" Coglianese said softly to her brother in Spanish.

"Si!" he answered brightly.

To be sure, not all adults with disabilities face the same sort of challenges Grabowski and Sanchez face. Braddock said the vast majority of people born with Down syndrome today, assuming access to treatment, service and support, experience mild to moderate cognitive disability.

"They are able to live a productive life," he said.

But Josephine Grabowski's day-to-day life offers a glimpse of how precarious care arrangements can be - even with outside medical and social service assistance. She or a part-time nursing assistant changes Frankie Grabowski's bedsheets an average of 18 times a day. Late last fall, he developed a toothache. Unable to express what was wrong, he banged his head against the wall for hours, leaving marks. His mother arranged for him to be sedated and carried to a dental clinic by ambulance. He had to have four teeth extracted.

Still, with the help of Jenny Howard, a social worker from the Adult Down Syndrome Center at Advocate Lutheran General Hospital in Park Ridge, Grabowski has come up with a plan for Frankie's care. She has signed the necessary paperwork so that her son will move to a nursing home when she dies.

Two years ago this August, Josephine had a heart attack as she walked to her bedroom one night from the washroom. An older son staying at her house was able to get her help, and today she describes her heart attack in almost-glowing terms.

"I felt peaceful," she said of her five-day stay at Our Lady of Resurrection Medical Center. "It felt so good, just sleeping. If this is the way it is when you die, I'm not scared. I'll catch up on 48 years of needing sleep."

Wednesday, September 19, 2007

From the Desk of Dr. Stephen Hall

Good people working on behalf of others,

After 25 months of hard daily work, we now have in hand written confirmation that CMS, Federal Medicaid, has approved Georgia's New DD Waivers. These new waivers, the first significant change in waiver services for persons with developmental disabilities in Georgia history, promise increased self-detemination and customer control of resources. Similar waivers implemented in other states have resulted in increased providers, higher quality services, and efficiencies not atainable with the old waivers.

I want to thank Mark Trail, Judy Hageback, and their great staff at DCH for the hard work they have done to help make this happen. While there is plenty of work ahead for us to do together, this is definitely a great new beginning.

While many will attempt to give me a lot of the credit for bringing modern new waivers to Georgia, that is simply not where credit is due. Instead, credit must be given to people with disabilities themselves and their families and those who advocate on their behalf for their tireless commitment and support to make these long needed changes a reality. Many staff in the Office of DD and the Division of MHDDAD deserve some credit, among the DD Office staff certainly Dr. Darlene Meador would top everyone's list as she kept them moving forward when at times they seemed buried in a bog of bureaucracy and history of resistance to change.

But the person who has done the most to make this possible is a woman that most people simply know as L.C. who changed her own life and in the process forever changed Georgia and a nation in its care and treatment of citizens with developmental disabilities in L.C. v. Olmstead before the United States Supreme Court. Everyone of us doing good work in Georgia stand on the shoulders of this great woman.

Respectfully yours,

Steve Hall
Director Georgia Office of Developmental Disabilities
September 17, 2007

Tuesday, September 18, 2007

Follow-Up Resources

These are the resources that Guy Caruso mentioned at last weekend's Partners in Policymaking meeting.

Click here to view John O'Brien's 'Reflecting on Social Roles'

Also, click here for Norman Kunc's 'A Credo for Support'. On his web site look under 'videos', and different copies (poster/video/DVD) can be ordered.

For a copy of the video 'A Little History Worth Knowing' people can go to www.disabilitytraining.com.

The Wolf Wolfensberger material can be read in a small monograph titled:
A Brief Introduction to Social Role Valorization: A High-Order Concept for Addressing the Plight of Societally Devalued People, and for Structuring Human Services, 3rd (revised) edition, $14 per copy, by calling Carol Flowers at 315-473-2978 to order.

NEW RESOURCE: The Job Developer's Handbook

Practical Tactics for Customized Employment
By Cary Griffin, David Hammis, & Tammara Geary
Forward by Steve Hall

One of the most practical employment books available, this forward-thinking guide walks employment specialists step by step through customized job development for people with disabilities, revealing the best ways to build a satisfying, meaningful job around a person's preferences, skills, and goals. Internationally known for their innovative, proactive job development strategies, the authors motivate readers to expand the way they think about employment opportunities and develop creative solutions.

Readers will get fresh, proven tips and ideas for every aspect of job development for youth and adults with significant support needs:

~Discovering who the person is and what he or she really wants.

~Ensuring goodness of fit between employer and employee.

~Finding—or creating—"hidden jobs" in smaller companies.

~Empowering people through resource ownership (investing in resources that employers need).

~Skillfully negotiating job duties while managing conflicts that might arise.

~Creatively maximizing benefits using social security work incentives.

~Encouraging family support while respecting the individual as an adult.

To make each part of job development easier, the book arms readers with practical content they can really use: easy-to-follow, step-by-step guidelines; checklists of critical questions to answer; success stories in both urban and rural settings; and sample scenarios, dialogues, and interview questions.

Equally useful to veteran professionals and those just starting out, this compelling guidebook breathes new life into the job development process and helps readers imagine a wider world of employment opportunities for people with disabilities.

For Ordering Information:
The Job Developer's Handbook
Practical Tactics for Customized Employment
By Cary Griffin, David Hammis, & Tammara Geary

Thursday, September 13, 2007

Governor Perdue Announces August Revenue Figures

Sonny Perdue
GOVERNOR

For Immediate Release
Contact: Office of Communications, (404) 651-7774
Monday, September 10, 2007
Charles Willey, DOR, (404) 417-2106

Governor Perdue Announces August Revenue Figures

ATLANTA – Governor Sonny Perdue announced today that net revenue collections for the month of August 2006 (FY07) totaled $1,305,342,000 compared to $1,296,959,000 for August 2005 (FY06), an increase of $8,383,000 or 0.6 percent.
The percentage increase year-to-date for FY07 compared to FY06 is 6.5 percent.


For the complete report, please click here.

IAOHRA/NAHRW Civil Rights Conference

Join more than 200 participants for the "First Ever" NAHRW-IAOHRA conference at the Hilton Atlanta Hotel, Atlanta, Georgia.

This gathering offers the unprecented opportunity to develop strategies and solutions important to addressing the global and domestic issues facing today's human right professional.

Click on the following for:
The Conference Brochure
The Agenda
Detailed Schedule
To Place an Ad

Contact Information
Carol Feguer
Phone: 717-787-4412
Email: cfeguer@state.pa.us

September 20 Ticket Panel Teleconference Accepting Public Comments

On September 20, 2007, the Ticket to Work and Work Incentives Advisory Panel (the "Panel") will hold a teleconference. The public is invited to listen to the teleconference by calling the phone number listed below.
Public testimony will be taken from 3:30 p.m. until 4 p.m. Eastern Daylight Savings Time.

You must be registered to give public comment. To register for the public comment portion of the meeting, please email: Debra Tidwell-Peters or call: (202) 358-6126. The full agenda for the meeting will be posted online at least one week before the starting date or can be received, in advance, electronically or by fax upon request.

The Ticket Panel was established to advise the President, the Congress, and the Commissioner of the Social Security Administration on issues related to work incentives programs, planning, and assistance for individuals with disabilities.

DATES: September 20, 2007
Time: 2:00 to 4:00 p.m. EST
Ticket to Work and Work Incentives Advisory Panel Conference
Call-in number: 1-888-790-4158
Pass code: PANEL TELECONFERENCE
Leader/Host: Berthy De la Rosa-Aponte
SOURCE: Social Security Administration

Partners Kick Off Weekend

The class of 2007-2008 of Partners held it's first session last weekend. This is the 17Th class of Partners, and even though I have only been around for the past five classes, each class has its own personality and style. This class is definitely full of energy and strong opinions. Graduates Will McKeen, Radha Vettraino, Linda Blackwell, Susan Shelnut, Sherry Richardson and Christine Kramlich addressed the new class and gave glowing testimonies of their Partners experience from last year.

Guy Caruso started us off on Saturday with the History of Disability and Kathie Snow held her own with People First Language and the Parent Movement. Guy showed us the Credo of Support. If you check it out on You Tube, be sure to watch When the Moon Comes Up also by Norm Kunc. It so important to be reminded of how people with disabilities were treated in the past, so we never repeat the pattern.

Monday, September 10, 2007

Medicaid Resources

Medicaid Long Term Care Expenditures FY 2006
presents national data as well as state-by-state data for Nursing Homes, ICF/MR, Personal Care, HCBS Waivers, Home Health, Home Care, Inpatient Hospital Care, Inpatient DSH, Inpatient Mental Health, Mental Health DSH, Medicaid Managed-Care, Prescribed Drugs, Targeted Case Management and PACE.

Medicaid HCBS Waiver Expenditures FY 2001 through FY 2006
presents data from Federal Fiscal Years 2001 through 2006. Each HCBS waiver is classified by population served in order to show the distribution of HCBS waiver expenditures across long term care populations. This year's memo also identifies which waivers exclusively serve children.
Source: Thomson Healthcare (formerly Medstat)

Review the memos which offer a great overview of spending trends or explore the spreadsheet containing vast amounts of figures and data.
CMS State Medicaid Directors Letter: Using Peer Support Services Under Medicaid
Summary: This letter provides guidance to States and discusses policy issues related to peer support and notes that States are increasingly interested in covering peer support providers as a distinct type for the delivery of counseling and other support services. The letter (SMDL #07-011) provides policy guidance on requirements for supervision, care-coordination, and minimum training criteria of peer support providers.
Topic(s): Mental Health, Peer Supports
Source: CMS

Disability Benefits 101 Website and Benefits Planning Calculators
Summary: This website for workers and job seekers includes easy-to-read descriptions of state, federal, and private benefit programs, paginas en Espanol, life situation articles, a glossary and bulletin board. There is also an interactive tool that helps users predict what would happen to benefits, in a number of what if scenarios. Calculators included: the benefits to work, job to job, school and work, Medi-Cal for working disabled, and Plan for Achieving Self Support (PASS).
Topic(s): Medicaid Infrastructure Grant
Source: Grantee produced, California, World Institute on Disability

Medicaid Buy-in Enrollment Projections for Kentucky - Lessons from Other States

Summary: This report provides estimates of likely enrollments in Kentucky should the state implement a Buy-in program. The estimates are based on a statistical analysis of data from states that have implemented programs. The analysis takes into account both characteristics of the states and characteristics of the states' programs that are likely to affect enrollments. Relevant considerations include the number of individuals with disabilities, participation rates and the state's economy.
Topic(s): Developmental/Psychiatric Disabilities, Medicaid Infrastructure Grant, Physical Disabilities
Source: Grantee produced, Kentucky, Martin School of Public Policy and Administration

Students with Disabilities Not Given Proper Education

A growing concern among parents with children receiving special education services is that their children are coasting through the programs. Parents have found their children receive special accommodations outside the guidelines of their Individualized Education Program (IEP) and many with poor attendance and low quality work still receive passing grades. Parents are happy to see their children moving through the system, but not without making appropriate academic progress.

Full Story: John Hechinger & Daniel Golden, When Special Education Goes Too Easy on Students, Wall Street Journal, August 21, 2007.

Brief Issued on Dropout Percent for Students with Disabilities

The 2004 reauthorization of IDEA requires states to collect and report data to plan and evaluate their obligations under the law. Since increased accountability in the area of dropout prevention is crucial to avoiding costs such as unemployment and higher rates of incarceration incurred by individuals with disabilities and society as a whole, the National High School Center (NHSC) has published an issue brief on this topic. The NHSC's brief provides recommendations for data collection by state education agencies, identifies successful programs, and lists guidelines for states developing performance plans.

Full Report: National High School Center, Dropout Prevention for Students with Disabilities: A Critical Issue for State Education Agencies, May 2007.

No Child Left Behind Act: Education Should Clarify Guidance and Address Potential Compliance Issues for Schools in Corrective Action and Restructuring Status.

Research & Statistics for Educators Update: Reading First and Special Education: Examples of State-Level Collaboration

This study describes the collaborative relationship between Reading First and special education in six states. Project Forum at the National Association of State Directors of Special Education (NASDSE) completed this study as part of its cooperative agreement with the U.S. Department of Education's Office of Special Education Programs (OSEP). This information has recently been updated, and is now available.

A new publication, Engaging Parents in Education, at the 2007 National Parental Information and Resource Center

At a Conference in Baltimore, Md. U.S. Assistant Deputy Secretary Morgan Brown discussed the importance of informing parents and students of their education options under No Child Left Behind and engaging parents in decisions about their children's education.

New resource on IDEA in Spanish

Randy Chapman authored the recent "The Everyday Guide to Special Education Law," a guide that can be used by parents, advocates, educators, and administrators.

The guide is now available in Spanish as well as English, in a side-by-side translation.

Register Now for the Sibling Leadership Network Conference, November 9-10, 2007

The Sibling Leadership Network (SLN) is pleased to announce that registration for the Sibling Leadership Network Conference is now open. Please share this announcement with adult siblings of people with disabilities, researchers, family members, service providers and appropriate listservs.

SLN is a community of adult siblings, researchers, and service providers committed to sibs' concerns. Our goal is to provide siblings of individuals with disabilities the information, support, and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families. We passionately believe that siblings with and without disabilities can effectively advocate for policies that will benefit people with disabilities and their families.

Despite the ever-changing roles they will assume in the lives of their siblings with special needs, there is relatively little research on siblings and their concerns. The Sibling Leadership Network is interested in research that investigates resilience, support opportunities, and life choices across the lifespan.

Sibling Leadership Network Conference will be a conversation among siblings, researchers, people with disabilities, service providers, and policymakers. The goal of this event is to move the conversation into a plan of action. During this conference, we'll ratify the SLN's mission and values, discuss siblings' concerns with researchers and policymakers, and learn what current research reveals about brothers and sisters. Finally, we'll develop an action plan and a white paper on sibling issues, policy recommendations, and a research agenda.

Please join us for this exciting, historic event!

Where: Renaissance Hotel, Washington DC
When: Friday and Saturday November 9-10, 2007
Cost: $75 until 10/19/07 and $90 thereafter
Registration form with agenda and additional details.
Questions: John Kramer 312-996-7988.

Sponsors/Key Partners: The Rehabilitation Research and Training Center on Aging with Developmental Disabilities; Vanderbilt Kennedy Center; NIDRR; AUCD; The Arc; The Ohio State Nisonger Center; The Sibling Support Project

Thursday, September 06, 2007

Information for Leaders in The Arc

From The Arc of the United States
Closing Sheltered Workshops Conference

In 2002, Vermont closed its last sheltered workshop for people with developmental disabilities.

Vermont APSE invites you to a fall conference to learn how they changed their vocational services for individuals with developmental disabilities. Hear from state representatives, service providers, self-advocates and their families, and employers as we address the issues we faced and the strategies we implemented in this conversion process.

A Time for Change
October 29-30, 2007
Hilton Burlington
Burlington, Vermont

For more information and registration, visit:
www.vermontapse.org

SOURCE: Vermont APSE