Monday, April 28, 2008

THOUSANDS MORE MEDICAID ENROLLEES COULD GET HOME AND COMMUNITY-BASED CARE UNDER NEW RULE DRA GIVES STATES NEW OPTIONS FOR CARE

Thousands of Medicaid beneficiaries who were previously limited to receiving care in an institutional setting may now be given the option to receive that care in their homes and communities, under a proposed rule published today by the Centers for Medicare & Medicaid Services (CMS).

The Deficit Reduction Act of 2005 (DRA) gave states a new option to provide home-and-community based services (HCBS) to Medicaid beneficiaries without applying for a demonstration waiver. The proposed rule provides guidance to states on how to implement this provision of the DRA.

Under this option, states will now be able to set their own eligibility or needs-based criteria for providing HCBS. Previously, to qualify for assistance with personal care, home health care or other services in the home or community setting, beneficiaries were required to be at imminent risk of institutionalization. The DRA provision eliminates this requirement and allows states to cover Medicaid recipients who have incomes no greater than 150 percent of the federal poverty level, or $15,600 per individual in 2008, and who satisfy the needs-based criteria.

“Thousands more Medicaid beneficiaries may now be able to opt for needed long-term support services in their homes rather than institutions,” said CMS Acting Administrator Kerry Weems. “Breaking the historic link between long-term care and institutions will level the playing field and give beneficiaries new choices for how they receive care.”

The proposed rule emphasizes “person centered” care, giving individuals an active role in developing their care plans, and the “self-direction” option in which states can allow individuals to take charge of their own services. The services states may make available under this benefit include case management, homemaker, home health aide, personal care, adult day health, habilitation, and respite care. The DRA also allows states to provide special services to individuals with chronic mental illness, including day treatment or other partial hospitalization, psychosocial rehabilitation, and clinic services.

Under the proposed rule, states would no longer have to apply for a waiver to provide HCBS to Medicaid beneficiaries. Under the DRA, states only need an approved state plan amendment (SPA) satisfying the DRA criteria. Once approved by CMS, the SPA does not need to be renewed nor is it subject to some of the same requirements of waivers such as budget neutrality.

Since the DRA made the HCBS option available beginning in January 2007, CMS has provided technical assistance to states wishing to move forward prior to publication of the proposed rule. One state, Iowa , has since been granted an HCBS SPA. Three additional states, Colorado , Nevada , and Georgia , have requests pending under CMS review.

“We anticipate states will be eager to take advantage of this new flexibility,” Weems said. “The home and community-based services option is a win/win opportunity, giving beneficiaries more control over their care and allowing states to spend Medicaid resources more efficiently.”

The proposed rule will be published in the Federal Register on April 4, 2008, and will have a public comment period through June 3, 2008. Click here to view the complete proposed rule.

ADRC Presents the 2008 Regional Training Conference:

"Strengthening Relationships Through Collaboration"

PLEASE FORWARD INFORMATION TO PARTNERS IN YOUR NETWORK.

Click here for the Registration Form for the ADRC training conference which will take place this summer in five different locations around the state. There is no cost for the training and each will be limited to around 125 attendees.

The Target Audience will be: Professionals, advocates and family members involved in the field of long-term care, or long term support for individuals who are aging or individuals with disabilities.

Limited seating available, so register early!

Email any questions to ADRCtrainings@yahoo.com

Stories From Central State

A mom’s tour of Central State Hospital
My name is Angie Saylors, I am the proud mother to five children one of which was diagnosed with Cornelia deLange Syndrome around the age of 6 months by her pediatrician. For confirmation, we were sent to the geneticist at our local children’s hospital and were told that the “best thing that I could do for my child was to “find a place for her”. I refused and didn’t know that institutions still existed in 1998.

Little did I know at the time, that 9 years later I would be attending a Partners in Policymaking class presented by the Atlanta Alliance on Developmental Disabilities (AADD), sponsored by the Governor’s Council on Developmental Disabilities (GCDD) and would be privileged to take a tour of Georgia’s Central State Hospital in Milledgeville, Georgia.

Being a native of Atlanta and growing up hearing about Milledgeville being a “mental institution” was quite threatening, so having a child and being told “the best thing that I could do for my child was to institutionalize her and now visiting Milledgeville/Central State was to say the least overwhelming. I had no idea of what I was to see or how I would feel about what I was to see.

Upon arriving at Central State, I was extremely surprised at how large the facilities were and saddened by how many people had been institutionalized here over the years. I wondered how many mothers had been given the same speech and recommendation regarding their special needs child and had placed their child here having no hope of raising their child within their own home and allowing the child to develop to his or her own potential within their own limits of what is “normal”.

Before we began our tour, I asked the question, “why does the sign outside the Administration Building, say Central State Hospital”? rather than, “Asylum or Institution”? The person giving the tour answered, because we are a hospital”, there are many people here that require 24 hour nursing care.” And we were taken to observe “clients” (as the patients are referred to) that required 24 hour nursing care. Again I asked, “Why are these patients here”? These are persons/young adults that I would consider medically fragile and many parents are caring for their children within their own homes everyday.

Along the tour, which in my opinion was very “staged” for our group tour, with matching comforters on the beds that were all neatly made, “clients” as they were referred to, (not patients) in the “group rooms” being what was called stimulation or group time where the “clients just sat around a tables” with limited paper, crayons, boards for matching colors, etc. and no “clients” in their rooms.

I kept thinking as we walked down long hallways that were painted a dull off-white and walked through doors that had to be unlocked with keys and bathrooms that were in the hall ways where showers were lined up in groups of three with no privacy, and where very few pictures or color could be seen, how awful it would have been for my daughter to be “placed” here. To grow up without the everyday love of her family, to be hugged and touched everyday, to be allowed to be who she is and to become whatever she is to become. How sad these people look, how long have they been here? Why were they put here? Did they have a family that had simply given up or did they just not appear to be what is considered “normal” and followed the instructions of their doctors to have them placed here?

The highlight of the tour was meeting the “clients” that were considered “higher functioning”, and this is where I met a very handsome young man with Down Syndrome. He had the most beautiful smile, the best hugs and a strong desire for communication and to be talked with and loved. Again, I thought to myself, WHY is he here? This is not a home. This is an institution, a mental asylum. Tracy has many capabilities and could function very easily within “our society” and outside of Central State. He had no apparent medical conditions or what would be considered medically fragile or nursing care needs, why would he need to be “hospitalized”?

During the tour, I was asked by a reporter that was allowed to go along with us, “why are you here? Are you here because you are considering Central State as an option for your child someday”? I was totally taken off guard and could not believe that this young man that had taken this tour with me and observed what I observed would or could ask me if Central State was a consideration for my child?

Central State is simply not a place for persons with special needs or disabilities. Persons with special needs or disabilities are not persons that need to be locked up, disrespected with lack of privacy, confined, not offered or given an appropriate education, or restricted to an environment that blocks them from the public eye and to be forgotten.

Persons with special needs or disabilities are people just as you and I. They have the same needs, requirements, desires and dreams for life that you and I have. The only difference being, they were labeled as special needs or have a physical appearance that makes them stand out and be noticed. Many of the persons that have been placed within Central State are there for the wrong reasons and continue to be locked up as if a prisoner or detainee. What they need are accommodations and assistance that would allow them to become law-abiding tax paying citizens. Many of the persons there can give so much to the communities in which they would live and work.

A week has now passed since my tour of Central State Hospital, I will never forget the people that I met there. What an impact and humbling experience this was. Each day that has passed I look at my daughter and am thankful that I refused to be told what my child would not be able to do and where she should have been placed.


By Dorothea Cadet
A group of us mothers enrolled in the Partners in Policymaking traveled to Central State Hospital in Milledgeville a few days ago. Upon entering the massive grounds of the facility, I began to wonder what causes a person to be admitted. More importantly, how can a patient find the positive path back to home and community, if at all? As the single parent of an adult son with a developmental disability, I have to face my own mortality and what how it will affect my son’s life. Could he be placed here should something happen to me? Would there be a path back to home and community for available to him? How would my death or possible disability affect his physical, mental and emotional well being?

Our tour host graciously took us around the grounds of the hospital. Historically, Central State was the place of first and last resort to place a loved one with a mental and/or developmental disability. We visited with patients as young as six and old as eighty. Again, I pondered what does their path to home look like? According to our tour host, Central State Hospital immediately creates and designs exit plans for every person who enters. Their goal is to reunite patients to home and community. I would rather know that there is a revolving door to home, than a locked one. Yet, when I looked into the eyes of the patients we visited, I realized the path to home could be paved with thorns, thistles and weeds.

After our visit, I kept asking the questions of what, how and when. What will it take for us (the community at large) to realize that disabled people, regardless of the level of disability, want to live in freedom, inclusion and productivity. How much are we willing to commit financially, politically, and holistically in aiding the disabled in realizing that they have the ability to positively contribute to society? When will we (the community at large) stop looking at and labeling the disabled as unproductive, idiots, morons and lazy? We tend to think of them as a burden to society instead of contributors.

It is paramount that each of us comes to the realization of three things: (1) disability is a natural part of the human experience (it does not discriminate), (2) disability can occur from birth, illness, injury, and with age, and finally, (3) understanding and accepting persons with disabilities is the first step in ensuring that these persons will return home and become productive members of society. As in the words of Dorothy in “The Wizard of Oz”, there is no place like home.


Central State Hospital
By Judith Steuber
On many occasions I read articles on Central State Hospital. As a result, in my mind I envisioned the hospital to be little better than a 19th “insane asylum”.

On April 14, I was part of a Partners in Policymaking official tour of Central State and I learned there have been many changes since the 19th century. The facility is much like any other institution of its kind. Old buildings have been closed, newer buildings are clean and in good repair, employees appeared to care and administration appeared concerned about the ultimate outcome of those in their care.

As the parent of young men with disabilities, I wanted to know about institutional life. Previous experience taught me bricks and mortar do not define the place; people do. While the patients/residents appeared well taken care of and reasonably content, what was their life like? Is this the vision I have for my sons?

I was particularly touched by one man that I was fortunate to meet. He was friendly, outgoing and hungry for a new face. With supports, I could envision him in my neighborhood, talking to neighbors, going to work - living a real life with freedom to make his own choices. In a community setting he would be able to make real friends who would care about him and his well-being, not just staff paid to care for his needs. He would know people without disabilities as well as those with disabilities, thus, providing him with an opportunity to grow beyond his narrow isolated environment. He could learn to be a responsible, contributing member of society, not just a burden on the system to be provided with the bare minimum for survival by the taxpayers. He would be able to grow up, something we want for all of our children.

I could compare him with a girl I knew when I was young who had severe disabilities due to polio. While she was growing up she was unable to attend school and was home schooled by visiting teachers. Her mother ensured her place with the neighborhood children by providing every board game known to man and allowing us to take her on neighborhood adventures in her wheelchair. My own mother was horrified and convinced she should be protected from us since it was apparent that some of our adventures were not always safe. Her mother ignored the naysayers, was convinced she should not be isolated and would turn out fine. Her mother was correct. She grew up, got a job, met and married a man who was blind.They lived happy, productive lives.

When I compare the two lives – dependent isolation in an institution vs. responsible, community inclusion – I choose the latter for my sons. Will life be difficult for them? It probably will be at times but it is difficult for most of us at times.

Monday, April 21, 2008

Training Opportunity: People Planning Together Workshop -May 2008


As part of the Division of MHDDAD Office of Developmental Disabilities Good To Great project, there will be a special training opportunity titled People Planning Together Workshop. This two-day event is specifically designed for individuals with developmental disabilities who receive services. Two sessions will take place in May. Space is limited and pre-registration is required.

For further details and to register, please click here.

I AM ADAPT Show, May 1st, 2008

These links contain some ADAPT History Project videos and a preview of the
I AM ADAPT Show, May 1st, 2008.

-Click here for the History,

-Click here for a Preview of the video,

For more about ADAPT's 25th anniversary, click here.

Please forward this message by emailing this link.

Thursday, April 17, 2008

Partners in Policymaking Graduation!

The Atlanta Alliance on Developmental Disabilities
Cordially invites you to attend
The Graduation Ceremony of the

Partners in Policymaking
Class of 2007-2008
Saturday May 3, 2:00pm – 4:30pm

Doubletree Club Hotel at the Atlanta Airport
3400 Norman Berry Drive
Atlanta, GA 30344
404-763-1600

Please RSVP by April 29
To Rita Young 404-881-9777 ext 220
or rita@aadd.org

Trip to Central State



On Monday, April 14, Partners in Policymaking class members toured Central State Hospital in Milledgeville as a part of their major project for the year. We spent three hours touring the campus, talking with staff and individuals who live there,and for the first time getting to experience what an institution is like. A reporter and photographer from the Macon Telegraph spent some time interviewing us for a story they will be doing next week.

One of our Partners reminded us on the way home about a question that one of our speakers , Bruce Anderson, posed to us last October. He said our core question needs to always be,"Under what conditions is it okay to segregate?". If you ever have a problem in answering that question, going to Central State would validate the long term effects and dangers of keeping people separate.


Read more in Julie Beem's letter below:

Invisible. That’s the word that struck me as I toured Central State Hospital in Milledgeville earlier this week. The people we were there to see, those with developmental disabilities (DD), are the “invisible” population of Georgia.

I was one of nine moms from Partners in Policymaking, an advocacy training program sponsored by the Atlanta Alliance on Developmental Disabilities and the Governor’s Council on Developmental Disabilities. All of us have children diagnosed with a developmental disability, like autism or Down’s Syndrome, and some, like me, have children who also have psychiatric diagnoses.

I went to Central State not knowing what to expect. I knew the history of the hospital as one of the largest insane asylums in the country, housing over 12,000 people in the 1960s. What I saw in the living quarters and educational facilities for the developmentally delayed residents at Central State was not horrific. It was clean, they were well-fed, and the staff seemed caring and knowledgeable. Yet, I kept thinking how invisible these people are.

It was evident that our visit was a big deal. We were greeted by the supervisors of each unit and accompanied by Joe Coleman, Developmental Disabilities Service Chief, all who seem to be good people trying their best to care for the people of Central State. But you could tell by the look on the children’s faces in the medically fragile ward, and by the enthusiastic greeting we received by the young men enjoying a basketball game outside their residential unit, that they don’t get many visitors. They are tucked away; forgotten.

And, there in, lies the rub. At Central State, people with developmental disabilities have only their basic needs met. They have food, shelter, a place to sleep, clothes to wear, access to medical treatment. But what else do they have? What about meaningful work, enjoyable leisure activities, or more importantly, friends and family?

Society has always wrestled with the challenge of including marginalized populations, like people with disabilities. Here in Georgia, that seems especially true. Nearly a decade has passed since the Olmstead decision in which Georgia was appealing for the right to enforce institutionalization, but the Supreme Court upheld the right of people with disabilities to live within their community. Yet, most Georgians have no idea how many people with DD are still in institutions or what is needed move these people into the communities. For most of us it’s “out of sight, out of mind”. Until a tragedy hits the headlines or we personally know someone, developmental disabilities remain invisible.

While none of us dare admit this aloud, there’s a fear that a life with a disabilities is a little less human than the rest of us. We make the mistake to think that people like my daughter are worth less in some way. This is where we moms of children with disabilities have an advantage over those with no experience.

My daughter has hopes, dreams, desires, dislikes, just like any 11-year-old. Her sense of humor, compassionate heart, deep soul and unquenchable spirit show that she’s fully human. She has taught me more about being human and the value of life than any other person on this planet. And while those at Central State would lead more meaningful lives for themselves in the community, the point we often miss is how much more meaningful our lives are when these people are no longer invisible to us.

Friday, April 11, 2008

Training Announcement: Against All Odds - DD Conference - June 2008

Against All Odds is the name of the 2008 annual conference sponsored by the Governor's Council on Developmental Disabilities and the DHR DMHDDAD Office of Developmental Disabilities. This conference brings together people with developmental disabilities, family members, service providers, support coordinators, and policy makers to explore what is possible now as Georgia increases investment of public funds in individualized, person-directed supports. This exciting opportunity to learn will take place on Sunday, Monday & Tuesday, June 1 - 3, 2008 in Athens.

Registration is now open. Click here for the brochure. Beginning next week you may register online by clicking here.

Please share this information with DD Stakeholders throughout Georgia by copying this link into an email.

Thursday, April 10, 2008

FODAC Event!

The 8th Annual 3k Walk 'n Roll and Silent Auction for Friends of Disabled Adults and Children, Too! (FODAC) will take place on Saturday, May 03, 2008 from 9:00 AM to 1:00 PM at Stone Mountain Park.

FODAC is a statewide and national provider of home health care equipment—mobility aids and daily living devices for people with disabilities and the newly injured.

100% of the proceeds from the walk help provide:
* Free refurbished durable medical equipment
* Disposable medical equipment
* Home ramps
* Vehicle modifications
* Wheelchair repairs
Walkers who raise $50 or more will get a T-shirt and an All-Attractions Pass to Stone Mountain Park.

For more information, visit these websites:
FODAC (for event information)
Run, Walk 'n' Roll (for registration)

Unlock the Waiting List Information

The Senate and House approved their budget recommendations, sending to the Governor a budget that includes 500 Mental Retardation Waiver Program (MRWP) services, 175 Independent Care Waiver Programs (ICWP) slots and a 3% rate increase for providers of DD and ICWP supports!

Click here for a complete list of budget items with dollar amounts.

Given the uncertainty in the economy, this additional funding for community supports is good news! We are thankful to the General Assembly for their support. We also know that the reality is that at the current level of funding, Georgia's waiting list for these supports will be more next year than today – not less.

There are currently 5,542 people on the MRWP community waiting list with this list growing by over 1,000 people annually. Also, while there are more than 129 individuals officially waiting for ICWP supports, we know that there are thousands living right now in nursing homes and other facilities that could benefit from the ICWP support.

The budget now goes to Governor Perdue for his signature. The Governor has until May 14th to sign the FY2009 budget into law. He can also decide to veto any specific funding item while approving the remainder of the bill.

DHR Board Meetings

2008 Schedule of Public Meetings

The monthly meetings of the DHR Board of Human Resources are open to the public. Meetings begin at 1:00 p.m. and are normally held in room 250 on the 29th floor of the Georgia Department of Human Resources central offices at 2 Peachtree Street, Atlanta.

Occasionally, the board will meet at a different location. The schedule is subject to change, so please check back at the DHR website (click here) to confirm times and locations before planning to attend.

The Mental Health, Developmental Disabilities and Addictive Diseases (MHDDAD) Committee of the Board of Human Resources meets the third Wednesday of each month -- the same day as Board meetings -- from 10:00 a.m. to noon on the 22nd floor at 2 Peachtree Street, room 270. Like the full Board meetings, MHDDAD Committee meetings are open to the public.

Date and Location:
April 16
DHR Middle Georgia Training Center
4885 Riverside Drive
Macon, GA 31210

478-757-2525

May 21 Atlanta

June 18 Public Hearing with location TBA

July 16 FY 2010 Budget Directions Atlanta

August 20 Atlanta

September 17 Atlanta

October 15 Location TBA

November 19 Atlanta

December 10 Atlanta

Tuesday, April 08, 2008

Resources on Abuse Prevention and Empowerment

The World Institute on Disability (WID) received funding from the National Institute on Disability Rehabilitation and Research (NIDRR) to develop a new Curriculum on Abuse Prevention and Empowerment (CAPE). The completed curriculum (anticipated for fall of 2008) will explore fundamental issues of abuse, best-practices training approaches, and stories of disabled people confronting and resisting abuse. CAPE also helps teachers adapt learning activities for use at disability and community events, rehabilitation sessions, schools and independent living training sessions.

Some CAPE resources are now available for free use via the WID website, including:
Excerpts from Sticks and Stones:Disabled People's Stories of Abuse, Defiance and Resilience, a collection of stories showing how people with disabilities have successfully resisted abuse;
A teaching guide;
Movies, comic book scenes, quizzes and games to accommodate various levels of literacy.

Resources are available in English and Spanish. For more information, click here for the World Institute on Disability web site.

Reference Points received initial support from the National Center on Secondary Education and Transition. Visit their web site for a wealth of information related to secondary education and transition for youth with disabilities.

Wednesday, April 02, 2008

New 2008 State of the States in Developmental Disabilities Study

APPROXIMATELY 2.8 MILLION OF THE 4.7 MILLION PERSONS WITH INTELLECTUAL DISABILITY IN THE U.S. RECEIVE RESIDENTIAL SUPPORT FROM FAMILY CAREGIVERS; AN ESTIMATED 715,000 OF THESE PERSONS RESIDE WITH CAREGIVERS OVER 60 YEARS OF AGE, NEW 2008 STATE OF THE STATES STUDY REPORTS

With almost 60% of people with intellectual disability in the U.S. receiving residential support from family caregivers and the number of persons over age 65 more than doubling within the next 30 years, the demand for services for people with developmental disabilities who reside with aging family caregivers will significantly increase within the United States, reports the new 2008 State of the States in Developmental Disabilities study by noted researcher Dr. David L. Braddock. Increased longevity of persons with intellectual disability is also stimulating demand for services and supports. The study is a detailed and only one-of-its-kind investigation of public spending, revenues, and programmatic trends of intellectual and developmental programs and services within the United States since 1977. It is particularly known for a 4-page "report card" on each state's intellectual and developmental disability spending. The latest edition of the State of the States (2008), published by the American Association on Intellectual and Developmental Disabilities (AAIDD), covers data until year 2006.

To read an introduction and scope of the study, click here.