CT Council on Developmental Disabilities

The CT Council on Developmental Disabilities announces the following initiatives for 2008:

$2,200 To publish and distribute two Cliff Notes-like guides to help parents navigate through the development of an individual education plan (IEP) with their local education agency. “The IEP Guide” and “Special Education Made Easy” will be printed in English and Spanish and distributed to 1,000 parents. The guides were created in collaboration with the Department of Developmental Services, State Department of Education, the CT Family Support Network and parents.

$42,185 To support grassroots parent organizing. This initiative will inform and educate families about their rights, services and supports. Activities will include gathering information from parents fed up with the lack of enforcement of the Individual with Disabilities Education Act (IDEA) and failure of the due process and complaint procedure. Advocacy will include strengthening legislation governing the use of restraints in schools. A study on the current use of restraints will be explored. A conference, training or workshop will be held on positive behavioral supports and interventions. The CT Council will start-up a Mothers (or Parents) From Hell organization to organize and support parents who want to aggressively advocate for appropriate education, community acceptance, services, rights and entitlements.

$33,315 To support a part-time staff person for the CT Family Support Council (FSC). The FSC was established in 1994 to promote establishment of a comprehensive, coordinated system of family support. The FSC has been successful in establishing and securing funding for a CT Family Support Network to support families directly but the FSC has not been successful in securing permanent funding to staff the FSC. A part-time staff person will enable the FSC to maintain the representation of the interests of families on various, boards, committees, councils, hearings, task forces and workshops while the FSC pursues permanent funding.

$5,000 To support the Disability Advocacy Collaborative’s 2008 Disability Convention and Expo in Hartford. The CT Council has supported the Collaborative for 4 years, including the first Convention and Expo in 2006. The Convention provides candidates for national, state and local elections to present their positions on disability issues. 2008 is a presidential election year. The Convention is also an exposition for providers of goods and services to people with disabilities and their families.

$8,500 To continue a Robot Hide and Seek competitive robotics event at the Fire Fighting Home Robot Contest at Trinity College, Hartford, on April 12 and 13, 2008. This is the second year the CT Council has supported international competition on the design of robots that can find a child with intellectual disabilities who is hiding in a burning building. The event also includes a symposium for parents of children with disabilities on interactive robots. The symposium will be held on April 12, 2008 from 2:00 p.m. to 3:00 p.m. The symposium will be presented by Dr. Francois Michaud of the University of Sherbrooke, Quebec, Canada. Dr. Michaud has extensive experience designing robots that interact with children with intellectual disabilities.

$10,000 To support the Disability Resource Network, Ansonia, to enable youth leaders with developmental disabilities to participate in activists activities locally, statewide and nationally. Youth with developmental disabilities under the age of 21 who are emerging leaders will attend and participate in demonstrations, protests and rallies concerning issues of importance to people with developmental disabilities and their families.

$32,400 To support Kids As Self Advocates (KASA), a grassroots self-advocacy organization for adolescents and young adults between the ages of 13 and 24. The CT Council has supported KASA for 6 years. KASA works to empower members to make informed decisions and speak for themselves but does not engage in civil disobedience. Support for KASA is a CT Developmental Disabilities (DD) Network event. The Office of Protection and Advocacy (P&A), Hartford, administers the CT Council’s funds for KASA and KASA is housed at the University Center for Excellence in Developmental Disabilities (UCEDD) at the University of Connecticut Health Center, Farmington. The CT Council, P&A and UCEDD are sister agencies that make up the CT DD Network.

$36,725 To support a “Life Threatening Public Policy” series of 15 workshops targeting hospital patient advocates and ethics committees. Self-advocates, parents, providers and the public is also invited to participate in many of the workshops. The series will address growing acceptance of public policy that threaten the lives of people with disabilities. These policies include altruistic filicide, growth attenuation treatment, suicide tourism, withholding food and hydration from newborns with disabilities, genetic testing and selective abortion, eugenics, death by committee, and the use of painful and potentially deadly aversive electric shock. Several of the workshops will be conducted by the Social Role Valorization Implementation Project, Worcester, Massachusetts. Several of the workshops are also co-sponsored by the CT DD Network. The workshops begin on March 5, 2008 with a presentation and book signing on Citizen Advocacy by Tom Kohler, Savannah, Georgia, at the Farmington Public Library from 2:00 p.m. to 4:00 p.m. Mr. Kohler will tell the story of Waddie Welcome and sign his book Waddie Welcome and the Beloved Community. While Waddie was dying, his circle of friends took turns visiting everyday, six visits a day, for 29 days.

The CT Council will address the plight of people with severe and multiple disabilities, particularly people with communication difficulties, who use personal assistants and who reside in institutions, when they are sent to emergency rooms. Such people are often dropped off and left alone. Because they cannot articulate and do not have assistants, they are often the last to be addressed with no one to help with communication. The CT Council will work with the Department of Public Health to address this issue.

The CT Council will also explore health care issues associated with aging with disabilities as part of the Department of Social Services Aging and Disabilities Resource Center initiative.

The CT Council will work with the CT DD Network on mortality review follow-up.

$70,000 To work with Connecticut Public Television (CPTV) to redesign the CT Council’s 2006 “Able Lives” television series on inclusion in the community into a “how to” toolkit for distribution to policymakers, parent and self advocacy groups, educators and schools, libraries, business decision-makers and community leaders. The toolkit will be based on the original 10 half-hour “Able Lives” episodes and include creation of a master 2 DVD set featuring all 10 episodes. “Able Lives” is a trademark of the CT Council on Developmental Disabilities. In 2007, “Able Lives – Inclusion Works!” was a series of short vignettes and radio advertising. The CT Council also loaned the name “Able Lives” to the Department of Social Services for the production of “Able Lives, Incorporated,” a series of half-hour episodes on employment of people with disabilities funded under ConnectAbility, the state’s Medicaid Infrastructure Grant.

In addition the CT Council will work with ConnectAbility to address transportation linked to employment and distributing information about employment related incentives and benefits.

Through the state’s “Money Follows The Person” initiative with the Department of Developmental Services and the Department of Social Services, the CT Council will be exploring increasing the availability of personal assistants and personal managers, including better pay and health benefits, and a system for helping people with recruitment, interviewing and obtaining backup assistants.

Other initiatives include exploring how to increase housing opportunities, becoming active in housing coalitions and working with architects, developers and landlords on incorporating universal design. The CT Council will continue working with the CT DD Network on influencing state and local disaster preparation planning.

The Connecticut Council on Developmental Disabilities is a federally funded, governor appointed Council comprised of people with developmental disabilities, family members, service providers and state agency representatives whose mission is to promote the full inclusion of all people with disabilities in community life. The Council is charged by federal statute to engage in advocacy, capacity building and systemic change activities on behalf of people with developmental disabilities, their families and their communities.