Monday, May 12, 2008

Governor Perdue Announces April Revenue Figures


ATLANTA – Governor Sonny Perdue announced today that net revenue collections for the month of April 2008 (FY08) totaled $1,761,180,000 compared to $1,309,159,000 for April 2007 (FY07), an increase of $452,021,000 or 34.5 percent.

The percentage increase year-to-date for FY08 compared to FY07 is 4.7 percent.

“The dramatic rise in revenues this month is primarily the result of process improvements made by the Department of Revenue, including hiring an outside vendor to help process hundreds of thousands of additional payments when compared to this time last year,” Governor Perdue said. “While this looks like great news for the month of April, we anticipate revenues in the coming months will slow and balance this one month spike.”

Click here for the full report.

Congratulations to the class of 2008!


AADD is proud to present the 2008 class of Partners in Policymaking. Graduation was held at the Doubletree Club Hotel on Saturday, May 3rd with over 120 guests in attendance.Special thanks to Dottie Adams, Stacey Ramirez, Linda Blackwell, and Ameenah Rasool. Each Partner spoke to the audience on how they will take their Partners experience and help others. This is a class full of pure energy!

The graduates and their specialties or areas of interest are:
Adrianne McCullom, Douglasville: Educator, network builder.
Angie Saylors, Marietta: Passionate; not afraid to ask difficult questions.
Audrey Smith, Flowery Branch: Expert in education law; woman of style.
Ayoca Freeman, Hartwell: Author; supports families getting support.
B.J. Kelley, Lithonia: Realtor; interest in social and recreation opportunities for adults.
Carolyn Wall, Lilburn: Support coordinator; deep caring for others.
Cathy Fletcher, Marietta: Engineer; expert in cochlear implants; self advocate.
Charles "Ray" Washington, Stockbridge: Realtor; interest in lobbying.
Cynthia Branch, Lawrenceville: Member, Gwinnett Navigator Team; works for social justice.
Dave Zilles, Sandy Springs: Award winning advocate; works well with legislators.
Deborah Malone, Rome: Legislative advocacy; worked on HB 540 this session.
Debra Gibson, Snellville: Business owner; interested in learning more about GA budget.
Dianne Edwards-Andrews, Savannah: Connector; runs Navigator Team in Chatham County.
Dorothea D. Cadet, Union City: Heart for ministry; works for Chick-Fil-A.
Elizabeth S. Goodrich, Decatur: Expert in Olmstead; self advocate; works well with facts and stats.
Heather Murray, Augusta: Optimist; strategist; helps with IEP's.
John Edward Dallas, Decatur: Seeking inclusion through bridge building and diversity; GCDD staff.
Judith Steuber, Kennesaw: Mentor, Cobb County; hard working grandmother.
Julie A. Beem, Marietta: Writer; adoption; communication director.
Karen Cook, Rome: Business owner; Navigator Team, Floyd county.
Kathy Harwell, Rome: Retired special education teacher; Navigator Team, Floyd county.
Katrina Watson Washington, Stockbridge: Works for CNN; has fierce determination.
Lisa M. Robinson, Marietta: Job coach; employment is her specialty.
Melinda Smith-Pace, Columbus: Grant writer; Navigator Team leader.
Nancy E.W. Sellers, Atlanta: Dignified; has contacts within civil rights.
Patricia A. Wilson, Hiram: Trainer for nuclear industry; sibling.
Raissa Chandler, Fayetteville: Trainer; wants to be the Clark Howard for disabilities; DMA-6 expert.
Sampaguita Tate, Atlanta: SB10 leader; works well with those in power.
Sandra Humphreys, Rome: Parent to Parent; PLC North GA coordinator.
Sharon Capers, Grayson: ER nurse, expert in DD and Mental Health.
Stephanie Shapiro, Tucker: Works for Focus; believes institutions are not for anyone!

To email a graduate, click on their name. If you wish to contact any of the class members, they ask that you put "Partners" in the subject line so your message will not be filtered out as spam.

Tuesday, May 06, 2008

More Stories from Central State

Central State Hospital Tour April 14, 2008
Lisa Robinson, (Mother)
When my classmates and I first entered onto the grounds of Central State, I thought wow this is very huge, so many buildings mostly white in color and houses scatter about the campus grounds.

During this visit I believe it was very well organized and almost like a set to be filmed, with all the right props and rehearsed scenes to be recorded and filmed.

We toured the Allen Building, which house about 170 residents (in all there is about 5000 at the entire facility); all of them require skilled Nursing staff. Each of these residents was diagnosed with Profound/ Severe Mental Retardation and other disability issues. I met several young men and women their ages ranged from six year old to 22 years old…. Joseph who is 22 years old was totally bedridden and required care around the clock and then I met Marcellious who shares a room with John. Marcellious is 16 years old and has cerebral palsy and is severely contracted, he did appear to understand us when we spoke to him, but he did not acknowledge us. I talk about Marcellious because he had a impact on me immediately because I have a son name Marcellious also who is 17 years old and have cerebral palsy and severe mental retardation, you see this could be my son who has be institutionalized for reasons unknown. This made me feel sadden and it also made me want to do something, what I don’t know exactly but for sure I will get a living will so that my son will not have to go to a place like Central Hospital. You see when we use the word hospital it represents a place to make you well and heal you from what is ailing you then you go home to a loving and caring family who will continue to support your every need. This environment was not a nurturing and loving homelike environment, yes there was nursing staff but anything from a loving and caring family member.

I continued the tour with many thoughts on my mind; we were then taken to another unit where residents who have been deemed ready to transition back into the community. There were several different workshops areas where you could learn and perform different work duties. Each work site the resident can earn wages and learn skills that can be used when they re-enter the community. I thought it was a nice facility and area for the residents however it was very structured also with a guard present at all times.

Then there was the Boling Building and the Phoenix Building where the higher functioning people reside. We were informed that the staff ratio is six to one, which is in my opinion that is not adequate staff for folks with different levels of needs and concern.

In one building the rooms were decorated from Bed Bath and beyond or Martha Stewart Home Stores, with all bedding and accessories matching, nice beds and furniture and each room had televisions and other entertainment. Then it was the other unit that I believe that we were not suppose to visit, this unit was unclean, not furnished well, beds looked like children beds (adult men) slept in. They did not have the nice recreation rooms with different games and things to chose, in fact the only entertainment unit did not have any games in it and it was broken. I was very disappointed in this and felt bad for the men. We were told that it was due to funding that this unit did not have the same luxuries and quality that the other unit has, the men shared one shower area and one bath area.

My experience at Central State hospital is that for people who have been lost in the system with no other place to go, it should be a temporary solution. I do understand that children who are medically fragile need medical care, but lets fix this and find a way to get real loving, caring homes for our children, lets stop spending money on buildings and enlarging hospitals like Central to house more people, let us knock down the barriers that is preventing real solutions to this very real issue.


What Is Really Going On At Central State Hospital?
By Cynthia Branch
Milledgeville, GA - Sometimes parents are faced with many emotions including feelings of sadness, not knowing what to do, lost, guilt and insecurity when making life changing decisions. The stress, finances including emotional connotations of what to consider for a love one and a child, has forced many families to face placing their love ones in a group home, assistant living centers, other facilities, institutions for reasons unknown and for reasons involving the health concerns of the caregiver, aging parents or family members. The need for continuous support and services is very evident when the caregiver is no longer able to provide for their love one.

Understanding that some of the decisions may or may not be associated with many choices or options since one of the main driving factor equates to the mighty dollar of what will be spent towards the level of care, accommodations, placement, support and treatment in many cases that involve our love ones...which is really sad and yet very true.

First before sharing what was revealed through close observation, per what was understood after listening to others employed at Central State Hospital and as a concerned mother of a child with multiple disabilities Central State Hospital never be an option in planning for my angel's long term future.

Ahhh...Ahhh..., Central State Hospital and Facilities located in Milledgeville GA is approximately 2 hours and 30 minutes from Atlanta GA. Close observation revealed that on Central State Hospital's mass campus like grounds within some of the facilities/buildings concerns were revealed as follows:

Medically Fragile Facility - Hospital Setting

Adults ranging from 19 to 70+ years old were observed in this hospital section. As you walked through this area, you would see some of the walls and rooms decorated with stars, clouds, bears and etc. which is usually seen in a newborns room or nursery.
Concern... assuming many of the individuals in this area may have cognitive concerns, appear non- verbal and my possibility be visual learners if they are only see this type of newborn environment day after day, year after year without any change, it does not appear their minds will be allowed to grow and develop.

Further observation in this entire section revealed there were no cameras, no monitoring systems anywhere including where the staff or nurses station is. Individuals in this area appeared to have multiply disabilities inclusive of having a tracheotomy, breathing tubes, feeding tubes and remember many of them appeared to be non verbal and non mobile.

If complications should arise during sleeping hours there is a serious level of concern of how lives are saved if the staff is not in the immediate area with the individual or awake...survival appears slim to none because there is no monitoring system.

In the same adult section for the medically fragile there was (1) girl who had been in this area at for an approximately (3) years. She was 6 years old, cute as a button, had the biggest brown eyes, she appeared non verbal, did not giggle, did not smile, had a tracheotomy and AFO's on with no shoes. This adult hospital environment was inappropriate for a child this young, there were no other age appropriate children and no area for children to have fun.

All Men's Adult Facility

The all men's adult facility (dorm setting/building 5 floors) for approximately 60 men with disabilities that were Mild, Moderate and Mild/Moderate Autism.

Observation revealed that the limited staff was mostly women working and caring for this group of men - the ratio was 2 women assigned to approximately 6 to 10 men at a time.

Concerns - no cameras including monitors anywhere, most of the men had their own room if they did not have a roommate. You could if an individual had limited resources and received a little support from a family member , because the location of their room was noticeably different. The rooms did not lock and anyone could enter at any time. 24/7 Interaction with only men....what about those hormones with the number of women their caring for those individuals?

Understanding that many individuals may have been placed at Central State as young as 2 months, became adults there, lived out there lives and with approximately 4000 buried there.... is this another form of being sentence to life on death row without ever being able to smell the roses?

Georgia's aim should be regarding moving children and adults forward.....

1. Moving individuals out of the institutions. Preparing them for the transition which is inclusive of training, daily living skills and providing some form of resources for 3 months that will assist and prepare them upfront.

2. Educating individuals...in school the goal of education for any student is preparation for adult life and for adults preparing them to live on their own with hopes that they will become a contributor to society.

3. Rehabilitation for all individuals should be on the assumption that they can learn and must have the opportunity to do so through training, retraining, supports and assistance that is tailored to the individual involving the appropriate accommodations needed.

4. Unlock the Waiting Lists with more openings. Increase the number of waivers including the supports that is needed for so many individuals and their families.

5. Providing affordable health and dental insurance for caregivers.

6. Allocating the money to families through direct services....allowing families to control the money since many family member are already doing a better job of taking care of their love ones.

DISABILITY MOVEMENT....Georgians must continue to increase awareness, keep paving the way for so many deserving individuals and let life begin for so many outside of isolation.


April 16, 2008

Central State Hospital
Milledgeville, Georgia


As a member of a leadership program called Partners in Policymaking, I was recently given the opportunity to tour Central State Hospital in Milledgeville Georgia. I was very uneasy and scared at first about the decision I had made to attend Central State Hospital because of the things I had heard about the hospital as I was growing up, but then I decided I needed to know exactly what it was like for myself.

I will start by saying, I have a five year old little girl with the diagnosis of Down syndrome who absolutely means the world to me. Besides my relationship with God, she is the reason why I choose to get out of the bed in the morning and start a brand new day. She is the joy and love of my life, and her disability has truly changed me and opened my eyes to a whole new world. I am very grateful God chose me to be her mommy, and she is blessed to have such great families. We have so many hopes and dreams for her and step by step we are achieving them. I am so thankful because Central State Hospital will never be the future plans for my little girl. In fact, Central State Hospital opened my eyes to a world that I couldn’t envision for anyone.

I had no idea so many people whether young or old were abandoned. I thought moms and dads should love unconditionally, care inspite of good and bad times. Next to one of the beds of a young girl, her mother had left a note saying that she wanted to take her daughter’s pain away. I still wonder if it really the parent who was in pain because she did not understand her child was a very special person, and she did not know how to deal with her child’s disability. I feel blessed to understand that we are all equal under God, all having imperfections, but also perfect in his eyes.

After this haunting experience, I want people to know that if my mother had never had faith in me, or believed in me, I wouldn’t be the mother I am today. This belief stands true for all people. We need our families or people that love us in our lives. Since leaving Central State Hospital it has renewed my resolve to be a better listener, to help more people with or without disabilities, and to just try to make this world a better and safer place for all people.

What we sometimes fail to realize is we are all a day away from a car accident, or gun shot wound, or sickness. If God choses us to live and be paralyzed or to use a wheel chair, we will want to be treated with love, dignity and respect. It is the way we make each other feel connected to each other. As Maya Angelou said, “ I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

State shifting funds for disabled from institutions toward care within community

By Travis Fain
macon.com

MILLEDGEVILLE --There was clearly so much wrong with the young man.

The nurses at Central State Hospital said he was 16. He had a tube sticking out of his neck, and his arms were bent at unnatural angles.

And Lisa Robinson rushed to him because he reminded her of her son. They have the same name, and similar maladies ravage their bodies. Both can understand; neither one can speak.

Robinson and her friends cooed over the young man and his two roommates in a ward at Central State, complimenting them, eliciting smiles from trapped bodies. They understand what it's like when people look at you funny. Or when they don't know what to say and just withdraw. They're mothers of disabled children.

"It's automatic as a parent," said Robinson, whose own son is 17 and has cerebral palsy. "We can relate."

She and seven other mothers visited the state-run hospital a couple of weeks ago as part of a training program called Partners in Policymaking. They were learning what kind of care the government offers so they can be better patient advocates for their children or for others.

But they also were looking to answer a haunting question: What will happen to my child when I die?
Click here to read more.

An Evening With Kathie Snow

Hosted by The Georgia Advocacy Office and Citizen Advocacy of Atlanta & DeKalb

Disability is Natural

Please join us for a casual but exciting evening of conversation with Kathie Snow, who will lead us in a discussion about “Revolutionary Common Sense.”

Wednesday, May 7, 2008
7:00 until 8:30 PM


Kathie Snow has worked as a trainer and consultant on disability issues for 16 years and is the parent of two children, one of whom has a disability diagnosis. Kathie is an internationally recognized author of numerous books and articles that are used as university texts and training materials. She owns and hosts a website that provides free articles on approaches that promote positive images of disability. For additional information, please visit: www.disabilityisnatural.com

Clarkston Community Center
3701 College Avenue
Clarkston, GA 30021


(Behind the N. Indian Creek Library)
Directions: From I-285 take exit 40, Church Street/Ponce de Leon. Traveling toward Clarkston on either street turn right on N. Indian Creek. Turn left into the parking lot just beyond the library.

This is an Event for the Community.
Everyone is Welcome!
Clarkston Community Center is Totally Accessible.

Thursday, May 01, 2008

Polk Schools Must Pay Family $720,000

Administrative judge says district failed to adequately educate autistic student.

Polk County schools failed to adequately educate an autistic student and now must pay up to $720,000 to give 22-year-old Andrew "Drew" Sammons a proper education, an administrative law judge has ruled.

Bill and Janie Sammons have fought the School District for four years, contending their son was allowed to graduate without receiving the academic instruction or training in developmental skills that the law requires disabled students be provided.

In a 20-page ruling, Judge William F. Quattlebaum in Tallahassee sided with the Lakeland family, saying Polk's failure to provide a proper education for Drew Sammons was not the "accidental result of inadequate educational planning."

"It is clear (the district) was either unable or unwilling to provide the appropriate services to which (Sammons) was entitled," Quattlebaum wrote.

"This case established that Polk County didn't have means to teach autistic kids," said the Sammons' lawyer, Timothy Weber, of St. Petersburg...
Click here for the complete article from The Ledger

Current Partners in Policymaking class members Mindy Smith Pace, Adrianne McCullom, Stephanie Shapiro, Karen Cook, Dave Zilles,and Raissa Chandler attended a "Train the Trainer" on April 29 for a series of "Conversations that Matter" that will be held in eight cities around the state. The purpose of the trainings will be to foster collaborations between individuals and professionals working on aging issues and developmental disabilities. Current Partners will hold mid- day training events using curriculum developed by Guy Caruso and Kathie Snow. Locations will include; Rome, Franklin, Augusta, Columbus, Albany, Brunswick and Waycross. For more information email Rita.

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.