Barbara Monday continues her story of the journey to seek community living for persons with disabilities in Rome, Georgia.

Setting up the DIGS, Inc. non-profit corporation was found to be the easiest step in our primary mission to provide housing.  As we met and discussed our plan with others knowledgeable about construction costs, we developed a goal of $250,000 for our first personal care home.  This was a very conservative goal with the hopes of receiving community support in the form of donations of goods and services.  Although we are a very focused and determined group, none of us had much experience with fundraising and other roadblocks soon became evident.  As a newly formed nonprofit, the community had no knowledge of us and our mission.  We had no ‘track record’ of any accomplishments or evidence we could or would stay in existence.  The most surprising obstacle was the degree of discrimination and fear that still exists towards adults with developmental disabilities living in personal care homes in the community.  We all recognized it was going to take us a long time to build our first home.

The "Just As I Am" Choir

After several meetings and brainstorming sessions, we realized we could move forward much more quickly with other parts of our mission statement.  We had so many good ideas for leisure opportunities based on our adult children’s special interests and abilities. The city/county recreation authority agreed to help with places to meet.  A special education teacher with a background in music agreed to be our choir director and the ‘Just As I Am’ choir was established in November 2007.  Armed with a Christmas music cd and a t-shirt for each participant, the first performance took place in the food court of our local mall.  What magical joy each participant and parent/caregiver experienced that night!  It didn’t matter that some had difficulty speaking and only some could sing.  Everyone was a performer. A large audience of friends and shoppers gathered and shared this special moment. What a wonderful gift to all! 

The choir has helped to further the mission of DIGS in many more ways than expected. They perform regularly and receive donations. Word has spread through the community about the choir and what DIGS is all about.  But most importantly they have helped to form a cohesive group that has become a ‘family’.  Many parents/caregivers did not know each other and now are a support group to ‘go to’ with questions about the system, concerns about handling difficult situations, carpooling to performances and more. We all share the joys of watching our ‘children’ grow in their performing abilities, increased self-esteem, confidence and friendships.  We have also discovered that although each individual’s story of disability is different, we all share the common bonds of frustration (sometimes), guilt (sometimes), grief (sometimes) and unconditional love (always).

The "Snap Happy Camera Club": Again the t-shirt was important. To the members, it was a symbol of belonging. To the mentors, it meant "We can find you on a photo shoot." To the community, it seemed to mean, "Here are some people doing something I didn't know they could do."

We knew we were now on the right path and the Snap Happy Camera Club was formed in the spring of 2008. We planned for about ten to join but, nineteen attended the first meeting.  It appeared that our ‘adults’ were so hungry for activities to do where they felt accepted, they would attend anything…..even if it was something they had no interest in.  The attendance has now dropped to about fourteen regular members.  Using ‘point and shoot’ digital cameras, they enjoy going to different places of interest in the community to take pictures once a month. Curious onlookers will ask who we are.  They are impressed by the devotion of the photographers and the joy they show when they find a ‘good shot.’  Once a year, their photos are entered in the local fair with no special designation.  Some have won honorable mention ribbons.  The local convention center has a display of their work.  Using a strength with visual skills and unique perspective on the world, there has been a noticeable growth in their abilities since the club was formed.  Many take their cameras with them on vacation or around town and are using their cameras independently, just like anyone else.

Recognizing some true artistic ability by some of our members and love of creating by others, we next formed Art Hearts art club in 2009.  Volunteer art instructors teach a variety of skills from water color, acrylic, collage, to working in clay.  Membership is limited to fifteen, so each member will have the time, attention and space to work. Many parents/caregivers stay to lend a hand with passing out materials or extra help with the project. Without exception, art instructors want to sign up again to teach a class.  They will often remark about the genuine nature of our adults, the joy they show in their work and the appreciation they show towards the instructor.  Many of the projects become gifts for someone they care about.  Adults with developmental disabilities often don’t have the money or opportunity to purchase gifts for family and friends.  What a boost in esteem and feeling of independence it must be to give such a gift.

DIGS, Inc.: Kimberly McGuiness, Linda Blackwell, Suzanne Schroeder, Laura Harrison, Jean Battle, Barbara Paul, Charlie Schroeder, Barbara Monday, Linda Castellanos, Mary Williams

The Digs Story is written by Barbara Monday from Rome, Georgia, the mother of a young man who has a disability. She and other parents and interested persons are working diligently to provide services needed in their community. Barbara will write several blogs and will welcome your comments and questions. Thank you, Barbara.

DIGS Inc. began as a journey by several parents, grandparents and special educators who were concerned about the lack of services for adults with developmental disabilities in the Rome/Floyd County area, Georgia. Special educators were instructed to have transition plans for students before graduating from high school and found little or nothing for students who were not ‘job ready’. Parents and grandparents did not understand how or where to apply for services such as supported employment, respite care or housing beyond living at home. The majority of students were leaving school to go home with no place to go and nothing to do.

This group began to meet regularly and had guest speakers from different public and private agencies come to describe their areas of service provision. The group became increasingly aware that there was no funding, there were funding freezes and waiting lists, there were no service providers available or their children were not eligible due to strict or changing interpretations of the law. Frustration and hopelessness grew with the ‘you can’t because….’ information that was learned. Finding private services and housing was found too unaffordable for most and not available without traveling far.

The group decided that if anything was going to change, they would have to be instrumental in making the change. Developing Independence, Growth and Security (DIGS, Inc.) was formed and adopted … to provide safe housing, work and leisure opportunities for adults with developmental disabilities as its mission. In July, 2006, DIGS was incorporated as a nonprofit corporation and applied for and received 501C3 status with the IRS in July, 2007. Pictured above are the founding members of DIGS who remain determined to make a difference for all our “children” with developmental disabilities.

With the growing dissatisfaction with large state institutions, there has been a vast depopulation of large state facilities between 1990 and the present time. Several states (Alaska, the District of Columbia, Hawaii, Maine, New Hampshire, New Mexico, Rhode Island, Vermont, and West Virginia) closed all their large state facilities for persons with developmental disabilities. In addition, 27 other states reduced their large state facility populations by more than 50% over this time period.

While there are a number of alternate living situations which we will explore, there is still a need for residential placement for some persons, and for many this is a good solution. Let me give you an example.

Frances lives at Annandale Village near Atlanta Georgia. Her mother, a widow, lives about an hour away. Frances has an intellectual disability and requires close supervision. Her mother realizes that this will be a lifelong condition for Frances, and she wants to be sure that her daughter will have a good life even after her mother dies. They investigated a number of living situations and found that Annandale would meet their needs.

The slogan for Annandale is: “Their community..with our help.” The residents (referred to as “villagers”) form a family-like community engaged in work and play in a safe, sheltered home. Begun in 1969 with 8 residents and a staff of 4, it now has 95 villagers with a staff  of 88, with 15 residents in a special care unit and 15 in day care. The community is comprised of 10 residences, with choices of private apartments, semi-individual apartments, cottages and a 24 hour special care facility.

Annandale has 3 program tracts, based on individual needs. The programs include vocational opportunities, both on campus and in outside business organizations. The villagers market art work, have regular exercise and activities, and cultural opportunities in the area.

Frances visits her mother from time to time, but calls Annandale home. Her mother also visits Frances and has the peace of mind in knowing that she will have that home as long as she lives. You can see pictures of Annandale on their web site: www.Annandale Village.com.

There are a number of good residential facilities throughout the states. I don’t know the cost of the care but feel sure that this is a good solution for some families.

In future blogs we will discover how other families and agencies provide independent living for persons with developmental disabilities.

Let us know what you think and share your discoveries.

It is easy to forget that one method of housing for people with disabilities is still institutionalization in state facilities. Although this arrangement is gradually disappearing, it is still the only choice for many families due to lack of resources, family dysfunction, or other reasons.

Two years ago I was dismayed to learn of an event occurring in a state institution for persons with disabilities. The following article was, and is, my reaction.

Return of an Outrage

After five decades of observing, I thought it was over. I had hoped we would never again see headlines like the one dated March 27 on NPR.org: Abuse at Texas Institutions Is Beyond ‘Fight Club.’ The article described events in which staff members were charged with taking part in staging “human cockfights,” using residents with mental retardation for staff entertainment. Chronicled on a lost but retrieved cell phone, the evidence pointed to more than a year of staged late-night fights, some as recent as this past January, at the Corpus Christi institution.

My rekindled anger took me back to the 1960s, to revelations that changed my life. The first experience was made more real to me because of my son Billy, who has Down syndrome. I had just begun pursuing my goal to become a special education teacher. I wrote:

During that first summer, my class visited various facilities supposedly designed to educate children with mental retardation. A major event was the trip to Partlow, a residential institution operated by the state of Alabama. . . As a group, we walked into one expansive barn-like room, furnished with two long benches facing each other, no other furniture in the room, no curtains on the cloudy windows, and absolutely no stimulation of any kind. I stopped in the doorway, mesmerized by boys appearing to be around the age of ten or twelve, hands by their sides, staring blankly about them. This image was my nightmare for months to come, an image still present in my mind. I was so struck with the horror of “nothing to do” that I swore to myself, “That will never happen to my little boy.”

The second event occurred as I was progressing in my studies in mental retardation; I was shaken and outraged by the disclosure of conditions at Willowbrook, a Staten Island institution for children with mental retardation. Not only were children abused and living in squalor with little medical or mental health care, some of them were reportedly used as test cases for hepatitis studies. The nation as a whole was appalled when a young investigator, Geraldo Rivera, went into the institution with a hidden camera and revealed the unthinkable conditions at Willowbrook.

The Willowbrook expose was followed by a book written by Burton Blatt and Fred Kaplan, entitled Christmas in Purgatory: A Photographic Essay On Mental Retardation. As part of a research project at a Connecticut facility for persons with mental retardation, this book presented explicit photographs of residents being treated “less humanely, with less care, and under more deplorable conditions than animals.” In the Introduction, Dr. Blatt stated, “There is a hell on earth, and in America there is a special inferno. We were visitors there during Christmas, 1965.”

As a student, I felt sure that these dramatic disclosures would demand that residential institutions be carefully monitored and the persons living in them treated with dignity and kindness. The sad truth did not bear out my optimism.

When I became a professor in special education in the early 1970s, I took a group of students to visit a residential institution not far from our university. Although this was considered a model facility by many, my students and I witnessed an appalling procedure. As we were touring the grounds, we observed a fenced-in area where a large group of naked young men were being hosed off by attendants. We were appalled at the lack of dignity afforded these residents.

Almost half a century later we are still confronted with atrocities perpetrated on those persons most vulnerable in our society. Sure, in response to the article concerning abuse at the Corpus Christi institution, Texas state officials have announced steps to prevent more abuse. They intend to add supervisors to evening shifts, install security cameras in public areas at all 13 state institutions for people with intellectual disabilities, and to “continue to take swift and immediate action when abuse and neglect is reported.” But we know this does not address the real problem.

Originally placed in out-of-the way places, residential institutions were designed to protect the residents as well as the community. Such isolation seems to breed neglect and abuse that go unnoticed by citizens at large. The claim that this practice is less expensive for the state is not a valid reason for the continuation of such large, unmanageable facilities.

I have felt encouraged by the national trend leading to group homes, supervised apartments, family-supervised living, and other arrangements for people with developmental disabilities to live in communities and enjoy the rights of all citizens. In districts where this occurs, the population as a whole grows in many ways. The inclusion of persons with disabilities adds to the sense of diversity that makes us interested in each other and helps us develop sensitivity to the worth of all individuals.

The Texas incident reminds me that we must all be advocates for those less able to advocate for themselves. As advocates, we should be aware of past injustices, learn from our experiences, and be proactive in seeing that the past will not be repeated.

In future blogs we will examine alternatives to institutionalization. We will have several guest  bloggers who will describe solutions that offer favorable living situations for their family member who has a disability.

What solutions have you found or learned about? What questions or concerns do you have? Share with us!

While equal opportunity employment is a vital element in the inclusion of persons with disabilities into the community, there are other important ways to help accomplish this goal. An organization called SHOUT (Students Helping Others Understand Tomorrow) makes a concerted effort to introduce diverse groups of people to selected high school students.

SHOUT is sponsored by the Kingsport Chamber of Commerce and is designed to inform future leaders of possibilities for service in the area. For several years, Billy and I have been asked to meet with the group on Diversity Day, one of the five categories in the program. One of the stated goals for this session is: “To initiate, foster, and promote an understanding and appreciation for all people and their unique perspectives and contributions to the world.”

My thrust is the development of attitudes from tolerance to acceptance to celebration of diversity. Billy shows his slides, pointing out the normalcy of his life and the importance of his family. His real message, however takes place during his interaction with the students at lunch time and after the program. Initially reticent, they find that he is easy to talk with and fun to be around. Evaluations referred to it as “an eye-opening day,” stating, “Billy was awesome; it was definitely an amazing experience.” In planning their graduation ceremony, the students asked that Billy hand out their certificates. On the appropriate night Billy, dressed in suit and tie, shook hands and gave out certificates to all the students. At the end of the program, students write letters to thank the session leaders. One letter addressed to me read:

We were very privileged to have you speak to us on Diversity Day. Your presentation was a touching and heartwarming experience. Not only did you show us that you should not be ashamed of or try to hide your differences, but you urged everyone to CELEBRATE what makes them special. I think nearly everyone can agree with you that Billy has a way of teaching people that no one else is capable of. He has an extraordinary gift and that is something to celebrate.On behalf of everyone in the SHOUT program, thank you. We were blessed to have you!

It is a joyful opportunity to be involved with this group – future parents, professionals, and employers.

Do you know of community organizations that encourage and promote the inclusion of people with disabilities? Is there potential in any of your social organizations to develop such ideals?