COLA Newsletter, September 2008

October 1, 2008


rtf File COCA News9-08.rtf (83KB) [download]

From the Co-Chairs...
We are looking forward to seeing you at the Council on Community Advocacy (COCA) at the AUCD Annual Meeting, from Nov. 8 - 12, in Washington, DC! Each year new COCA members join with the "old-timers" to provide for AUCD the voice of people with disabilities and family members. Everyone is welcome, and you will have the opportunity to get as involved in AUCD as you would like. In addition to the COCA, there are other Councils and Committees that welcome COCA members' participation. If you are interested in advocacy, consider coming to the Legislative Affairs Committee meeting to learn what you can do to help move legislation forward for people with disabilities and their families.

The COCA will meet both morning and evening on Sunday, with a new opportunity this year for pizza and socializing at the evening meeting. Many COCA members will be part of workshops and other presentations during the conference. A new feature this year will be a Media Room, where you will have an opportunity to drop in and preview new DVDs and other products from Centers in the AUCD network.

Think also about the possibility of making an appointment with your Congressman or Senator while you are in town. If you are new at visiting your legislators, other COCA members could go together with you to help you feel at ease.

Most important, come so we can all spend time together. We are a powerful network of people who have become friends for life!

For more information on the AUCD Annual meeting in Washington, DC and for registration information, click here:

Susan and Gordon

From Angela Martin...
Celena Barnes, Member of the Michigan UCEDD Community Advisory Council, is passionate about building knowledge about disabilities throughout the City of Detroit. As a mother of four young girls ranging in age from 6-12 years old, Celena has spent many hours bringing her children to check out books and find information about a particular topic that interests one of her children. During a recent library visit, the Barnes family discovered that their local library has very little information on disabilities and in particular autism. This is particularly concerning to Celena since one of her daughters has a label of autism. In response to this need, Mrs. Barnes conducted a book drive to expand the availability of books and resources on disabilities for the City of Detroit's Library System. This book drive collected approximately 25 books for the city's library system. In addition the Developmental Disabilities Institute, Michigan's University Center for Excellence on Developmental Disabilities, matched the achievements of the book drive and purchased new books for the community's libraries. Congratulations to Celena Barnes for her work to build awareness about disabilities!

From Joey Younie...
The South Dakota UCEDD will be facilitating two important workshops this fall. "The Ziggurat Model" will be presented by Ruth Aspy, Ph.D. and Barry G. Grossman, Ph.D, which is hosted by the Autism Spectrum Disorders Program and "Early Identification of Children with Developmental Delays" presented by Linda Tuchman-Ginsberg, Ph.D. and Arianna Keil, M.D, which is hosted by the Birth to Three Program. For more information about the SD UCEDD please visit

From Carl DuRocher...
Our UCEDD Outreach at The Waisman Center, University of Wisconsin, has been awarded the Community Nursing Program. Dane County issued an RFP to identify who locally could contract with Dane County Human Services to serve citizens with developmental disabilities in this way.

Three Registered Nurses and clerical support will staff the program. One of the three positions will assume a leadership role for the clinic. This position will also maintain programmatic duties.

The program will be a community consultation model (similar to the Community Training Intervention and Evaluation Services (TIES), a UW-Waisman Center program serving children/families, adolescents and adults with developmental disabilities who live in the community.

The Community Nursing Program will collaborate with the Training and Consultation program to assure that training events for direct providers are appropriate. Each nurse will be assigned to a group of supported living and employment programs.

The nurses will act as consultants to the agencies for nursing care and responsible for assuring that recommendations from the Community Nursing Program remain with the agency.

Community Nurses will travel to the living and work locations of referrals to conduct the assessments. The focus of the assessment will include but not be limited to:

  • challenging behaviors
  • Mental illness
  • Medication education and medication management/administration
  • Physical cares
  • Dietary needs
  • Management of seizure disorders
  • Issues related to aging
  • Promotion of healthy lifestyles
  • Acquired brain injuries
  • Transition planning from hospitals, nursing homes or other health facilities back to the community
  • Referral to and advocacy for referrals to other health care facilities.

From Sharon Hauss...

Self Advocates of Indiana (SAI) has been busy preparing and hosting the SABE 2008 National Conference, that was held in Indianapolis, IN September 4-7, 2008. The Indiana UCEDD is a strong supporter of SAI and SABE (Self Advocates Becoming Empowered) and provided support and assistance in the planning of this national conference.

Other key agencies involved in planning and sponsoring the conference include the Arc of Indiana, Indiana Protection and Advocacy Services, the Governor's Council for People with Disabilities, Family and Social Services Administration of Indiana (FSSA), and the Administration on Developmental Disabilities (ADD).

The conference was held in downtown Indianapolis at the Marriott Hotel with nearly 1200 people in attendance and with representation from 40 states and Canada. The conference included 76 break out sessions, all presented by Self Advocates.

From Sandra Horne...

Maine UCEDD Developing Accessible Meeting Checklist and Guide
The University of Maine Center for Community Inclusion and Disability Studies, Maine's UCEDD, is developing a resource, Planning Accessible Meetings and Conferences: A Suggested Checklist and Guide, to assist meeting and conference organizers with planning an event from an inclusive perspective and creating a welcoming environment for everyone.
The checklist will provide guidance on the major phases of event planning: evaluating a location; meeting and conference room considerations; planning in advance for participant supports; registration forms and formats; promotion and dissemination; and practicing cultural awareness and inclusion when planning refreshments and meals.
A working draft of the checklist was presented to the University of Maine President's Council on Disabilities last April for review and comment. The Maine UCEDD hopes to have the final version of Planning Accessible Meetings and Conferences: A Suggested Checklist and Guide available online by Spring 2009. For more information, please contact Sandra Horne.

From Jan Moss...

The Center for Learning Leadership (CLL), Family Leadership Council was
developed to create and support real leadership opportunities for family members of children and people with disabilities in their chosen areas of expertise through a mentoring process by established Family
Mentors/Leaders in the State of Oklahoma. The Leadership Council members currently serve on Oklahoma advisory boards, task forces, and committees for children with special health care needs and children with disabilities including: Oklahoma State Department of Education, Oklahoma Department of Health, Oklahoma Children's Hospitals, Oklahoma Developmental Disabilities Services Division and others.

The CLL Leadership Council's mission is to:

  • Coordinate and manage information, activities and efforts across family organizations and with family leaders to build family leadership infrastructure.
  • Promote knowledge about and opportunities for family professional partnerships inside health care education and community living programs, improving their policies and practices.
  • Increase leadership capacity and promote family-centered/supportive care by providing technical assistance to Family-to-Family Health Information Centers (F2FHICs) and communities of learners.

One of the first opportunities the Family Leadership Council helped develop was a Joining Forces: Supporting Family Professional Partnerships Conference on April 16th.
Approximately 112 participants, families and professionals learned the basics of leadership and partnership. Some of the immediate outcomes of the conference are:

  • OK Health Care Authority will add family members to all of its committees and advisory boards.
  • OK Commission for Children &Youth will add family members to all of its committees and advisory boards.
  • Development of Family Expertise/Interest Inventory
  • Development of Database for Inventories
  • Development of Family Opportunities Inventory
  • Development of Database for Opportunities Inventories

For more information contact: Jan Moss.

From Barbara Levitz, Mitchell Levitz and KimLori Devine...

Announcing The New Links Network at the Westchester Institute for Human Development

The LINKS Network at WIHD: Leadership, Inclusion, Networks, Knowledge & Support for Individuals with Disabilities and their Families provides information, resources and training to support individuals and their families to live a meaningful and dignified life. Programs, staffed by individuals with disabilities and their family members, promote leadership, community inclusion, health/wellness, self-determination, and individual/family advocacy.

The LINKS Network staff also work closely to support the Consumer Advisory Council (CAC). Staff members serve as co-trainers using the new CAC curriculum, attend CAC meetings, and serve on committees to develop new materials such as a CAC recruitment brochure and CAC Resource Book.
The Hudson Valley Regional Office of Parent to Parent of New York State (PTPNYS) and the Hudson Valley Regional Office of Self-Advocacy Association of New York State (SANYS) are both LINKS Network partners and are located at WIHD. Program areas of the LINKS Network at WIHD also include:

  • Family Faculty and Advocacy:
    • Bringing a Family Perspective to Training, Planning and Public Policy- LINKS Network staff participate in councils, committees, workgroups and organizations on a local, state and national level to develop programs and policies that reflect promising practices and promote systems change. Staff of WIHD also serves as faculty of WIHD training programs and, together with family and self-advocate volunteers, assist in training students and professionals through presentations and through family mentorship home and community visiting experiences.
  • Emergency Preparedness Project:
    • Be Ready, Be Responsible, Be Safe- A training program to assist individuals with disabilities and their families in planning for emergencies.
  • National Service Inclusion Project (NSIP):
    • Everybody Can Be Great...Because Anybody Can Serve- A collaborative partnership with AmeriCorps sites to promote awareness of disability related issues on accessibility and independent living and to provide opportunities for people with disabilities to volunteer for the same reasons that anyone else does: to give back to their communities and to be active and engaged in life.
  • My Health, My Choice, My Responsibility:
    • Health Promotion Self-Advocacy- A training curriculum for self-advocates to promote health and wellness for adults with developmental disabilities.
  • WIHD Self Determination and Individualized Supports Project:
    • The Money Follows the Person- A regional learning network on individualized service and support options.
  • Transition:
    •  Circles of Supports and Person-Centered Plans- Provides training and outreach to parents, students and Medicaid Service Coordinators in a nine county region to help them in understanding their role in the transition process from high school to community life.

Contact information: KimLori Devine, Director.

More from Barbara Levitz and Mitchell Levitz...

Mitchell contributed the Foreword for the just released Third Edition of the book Babies with Down Syndrome by Woodbine House. Mitchell and his co-author Jason Kingsley were interviewed by Richard Robison for the opening plenary keynote at the 2008 National Down Syndrome Congress Convention attended by over 2000 family members and professional in Boston on July 11th. He also presented workshops for the NDSC Youth and Adult Conference on My Health, My Choice, My Responsibility. This health self-advocacy curriculum can be found on the website
Mitchell will also be the keynote presenter for the upcoming Atlanta Down Syndrome Association's Regional Conference on November 7th.

From Karen Irick...
The South Carolina UCEDD (Consumer Advisory Committee)
The true measure of how well a Consumer Advisory Committee impacts the UCEDD network is its level of involvement. The emergence of self-advocates and family members of people with disabilities from diverse backgrounds as leaders has made a significant impact on this nation. We have come to expect their perspectives to be forward thinking and shifting the pendulum. The evolution of the participatory Consumer Advisory Committee has given people with disabilities the opportunity to not only foster the development of self-advocacy leadership skills but skills that ultimately benefit the work of Centers for Excellence in Developmental Disabilities.

The South Carolina Consumer Advisory Committee, known as the Council on Consumer Affairs (COCA), is highly engaged in guiding the direction of the Center for Disability Resources (CDR) activities and projects. In a supportive environment, the COCA meets quarterly to provide valuable input into the decision making process. It consults with the Director on the Center's five-year plan and annual review to further the mission and shared vision of full inclusion of persons with disabilities in every aspect of society. The Director attends each meeting and the COCA Liaison provides administrative support. The CDR provides honorariums to all COCA Advisors who are individuals with developmental disabilities and family members.
In addition to administering an annual consumer satisfaction survey/focus group meeting, the COCA participates in interdisciplinary pre-service training, reviews materials and participates in conference planning with CDR projects.

It has developed by-laws and elected officers, established a travel policy, developed a COCA orientation manual and brochure, spearheaded the update of the CDR web-site, and established non-traditional partnerships to address minority representation on the COCA. Furthermore, the COCA Advisors have participated in public hearings on taxicab transportation and expanded its role to serve as the Disability Inclusion Advisory Council for the South Carolina Commission on National and Community Service.
More importantly, COCA Advisors are afforded the opportunity to continue to develop self-confidence and leadership skills. The following notable individual accomplishments have been made by COCA Advisors since their involvement as an Advisor:

  • The LaMondre Pough Show - Empowerment Radio;
  • Presidential Advisor to the 2007 - 2008 Board of Directors of the American Association on Intellectual and Developmental Disabilities;
  • Founder and CEO - Knuckles Disabled Services Consultant Company; and
  • Founder and Chairman - Over Comer's Ministry for People with Disabilities.
  • The South Carolina COCA is most appreciated by the faculty and staff of the Center for Disability Resources.

From Nila Benito...
On January 29th, 2008 Brian Sterner, a 32 year-old Tampa man who was injured in a 1994 wrestling accident, was dumped out of his wheel chair by a Hillsborough County Sheriff Office's (HCSO) Deputy. This incident occurred while Mr. Sterner was being booked at Hillsborough County's Orient Street Jail for a traffic violation. The Deputy instructed Mr. Sterner to stand so that she could frisk him. Mr. Sterner informed the Deputy that he had quadriplegia and was unable to stand. The Deputy dumped Mr. Sterner out of his wheel chair onto the floor and proceeded to search his pockets and clothing. The HCSO denounced this deplorable incident when the video taping from a surveillance camera was released to the press.

A national outcry of anger and consternation followed the airing of the video on national cable news and the internet. The Training Division of the HCSO contacted the Florida Advocacy Center for Persons with Disabilities (P&A) which in turn contacted the Florida Center for Inclusive Communities (FCIC) - UCEDD to seek assistance in this matter.
The FCIC has been collaborating with the Advocacy Center and the HCSO Training Division to identify gaps in the training of their Deputies and work on developing an assessment process regarding training needs in the area of disability awareness and sensitivity. In so doing, we research existing training materials, resources, and curricula in the area of disability awareness and law enforcement. We have compiled a listing of the existing materials.
We also conducted an extensive needs assessment that included an anonymous survey of a sampling of HCSO Deputies and several focus groups with detention Deputies. Our survey was completed by a group of 292 Hillsborough County Sherriff's Office (HCSO) Detention Deputies during the month of April 2008. This represents approximately 32% of all HCSO Detention Deputies. The purpose of this survey was to determine how detention deputies estimate their knowledge and ability level in dealing with detainees with physical disabilities, mental illness, mental retardation or an autism spectrum disorder.

Although a majority of Deputies reported feeling comfortable with their knowledge and ability to intervene with individuals with a variety of disabilities, almost 80% of all surveyed Deputies reported that additional training would be beneficial for them and their fellow Deputies. In analyzing the Deputies' responses, it became evident that the Deputies may not know what they don't know about the characteristics of individuals with disabilities or the need to adapt their approach to communicating and intervening with these individuals. One deputy summed-up his need for additional training with the following comment:

"The training we received in the academy was focused only on mentally ill inmates. While training in no way replaces experience, I can speak for myself when I say that more training is definitely necessary for dealing with the handicapped and mentally retarded. I have family members that are mentally handicapped, as well as with psychiatric disabilities. Deputies need to understand the difference between disruptive behavior due to lack of capabilities on the individual's part."

The focus groups also provided additional insights into the gaps in knowledge and understanding that the Deputies at all levels of leadership possessed with respect to working with individuals with different disabilities. The information gained from the survey and focus groups allowed us to effectively review the content of existing curricula and highlight gaps in the available training programs. We then identified areas where we could assist the HCSO Training Division to identify areas that may need tailored curricula development for all the HCSO law enforcement and detention deputies.
These efforts may lead to a state-wide change in law enforcement training with respect to individuals with disabilities.

COCA News was edited by Carl Durocher and Sharon Hauss