IT’S TIME !

END THE

WAIT!

Louisiana Developmental Disabilities Council

2006 2006

Annual ReportAnnual Report

A Message from the Chairperson and the Executive Director

Dear Friends and Colleagues, Federal Fiscal Year 2006 was marked by many changes as Louisiana began recovering from Hurricanes Katrina and Rita. For many years, the Council has been developing strong partnerships with our fellow DD Network agencies, the Advocacy Center and the Human Development Center, as well as other advocacy organizations, individuals with disabilities, their families, community providers, and state agencies. This year those partnerships were more important than ever. The state’s DD community was able to quickly organize and respond to the needs of individuals with disabilities and their families who were affected by the hurricanes. As the immediate needs were met, the Council and other advocates turned our attention to long term policy changes that will help ensure that the needs of individuals with disabilities and their families are not overlooked in the next emergency. One monumental change in 2006 came in the closure of Louisiana’s first developmental center – Metropolitan – south of New Orleans in Plaquemines Parish. The Council and other advocacy groups have long advocated for the consolidation and closure of Louisiana’s nine developmental centers, but it was powerful Katrina that eventually closed the doors of Metropolitan (MDC). Although MDC did not flood, its residents had to be evacuated and remain away from the facility for months due to the inability to staff the center. That problem and the need to evacuate every time a hurricane threatened were two issues on our side as we advocated for a better quality of life for these residents in the community. With all of the changes that have occurred this year, one thing remained consistent - the Legislative Session ended once again without allocating sufficient funds to address the New Opportunities Waiver (NOW) waiting list in any meaningful way. Nearly 15,000 people continue to wait a minimum of 12 years for the services they need today. In the past six years, the legislature has appropriated funds for only 691 new NOW slots, averaging 115 slots per year. At the current rate of funding, someone added to the waiting list in 2006 would receive a NOW slot in 128 years! Now, more than ever it’s time to end the wait! Sincerely, Lynette Fontenot Sandee Winchell Chairperson Executive Director

“Disability is a natural part of the human experience that does not diminish the rights of individuals with developmental disabilities to live independently, to exert control and choice over their own lives, and to fully participate and contribute to their communities through full integration and inclusion in the economic, political, social, cultural, and educational mainstream of United States society” -- Developmental Disabilities Assistance and Bill of Rights Act of 2000, Public Law 106-402, et.seq.

The Louisiana Developmental Disabilities Council is made up of people from every region of the State who are appointed by the governor to develop and implement a five-year plan to address the needs of persons with developmental disabilities. Membership includes individuals with developmental disabilities, parents, advocates, and representatives from state agencies.

Developmental Disabilities Councils were founded in 1970 as a result of the passage of the federal Developmental Disabilities Assistance and Bill of Rights Act. In the DD Act, Congress acknowledged the inherent limitations of traditional service systems. Substantial financial resources have been dedicated to house people with disabilities in institu-tional settings away from their families, homes and communities. Few resources have been provided to support people to achieve independence and employment in their communities.

In line with our congressional mandate, the Louisiana Council has established goals seeking the development of options to meet individual needs.

Our goals include the development and coordination of flexible individual and family supports — which enable persons with disabilities to lead lives of dignity and full participation within the community. The major resources of the Council are concentrated on initiatives that promote supports that will enable individuals with developmental disabilities to live, work and play in the community of their choice. That focus will continue until this vision becomes a reality for every man, woman and child with a disability in Louisiana.

Our Mission

To ensure all individuals with developmental

disabilities benefit from supports and opportunities

in their communities so they achieve quality of life in conformance with their

wishes.

Our Values Each of us is unique. Each is endowed with individual potential - to learn, to grow, to take a rightful place in society. Whatever our limita-tions, and we all have them, each of us has contributions to make. Just as we all require some services from the community, each of us also needs opportunities to become the best that we can be. The right help - tailored to the needs of the individual - is critical in helping persons with disabilities help themselves. Naturally, people with disabilities have the same personal needs, preferences and feelings as everyone else. They also have competencies, capabilities and the same needs for accomplishment and independence. People with disabilities can - and do - achieve personal success, hold down jobs and live productive lives.

Five-Year Plan

The Council develops and implements a five-year plan to address the needs of Louisiana citizens with developmental disabilities. The plan is updated each year utilizing information gathered from stakeholders. In 2006, we collaborated with the Advocacy Center and the Human Development Center to host two Public Forum meetings. Participants were asked to rank issues according to how important the issue is to improving quality of life for people with disabilities. The majority of participants deemed increasing community based individualized services and supports as the most important need to address.

Public Input: Ranking of Issues 1. Community Supports 2. Better paid/qualified Direct Support

Personnel 3. Employment Supports 4. Accessible and Affordable Housing 5. Preschool Transition Services 6. Transition from School to Adult Life 7. Transportation 8. Balanced DD Service System 9. Primary/Specialty Health Services 10. Emergency Preparedness/Relief

2006 FINANCIAL REPORT

In 2006, the Council received over $1.3 million in federal funds through the Developmental Disabilities Assistance and Bill of Rights Act. Developmental Disabilities Councils are required to spend a minimum of 70% of grant funds on advocacy, systemic change and capacity building activities that promote the independence, self determination, integration, inclusion and productivity of individuals with developmental disabilities. The Louisiana DD Council spent 73% of our funds on these programmatic activities in 2006. This year, the Council expended program funds on initiatives in seven areas of emphasis: Community Supports, Quality Assurance, Housing, Education, Employment, Child Care, and Recreation. Because the lack of individualized supports and services is

an underlying cause of other barriers faced by people with disabilities, most of the Council’s major initiatives are in the Community Supports and Quality Assurance areas of emphasis. In addition to federal funds, the Council also receives state funds for the operation and administration of three Act 378, Community and Family Support System programs: a Supported Living program; a statewide support network for families of children with mental health needs, and a network of nine Families Helping Families Regional Resource Centers. Regardless of the source of the funding, all Council activities are designed to advance or support advocacy, capacity building and systemic change for Louisiana citizens with disabilities and their families.

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C om m un ity S uppo rts

41%

Q ua lity As s u ranc e

29%

R ec rea tion2%

C h ild C a re5%

E m p loym en t5%

E duc a tion9%

Hous ing9%

Distribution of Council Funds

Distribution of Program Funds

Administration 27%

Program 73%

Supporting

The Council provides funding and support for two grass-roots advocacy networks, a self advocacy organization and Partners in Policymaking™, a leadership training program for self-advocates and parents. People First of Louisiana The Council provides financial support to People First of Louisiana, the statewide organization made up of and run by people with disabilities, to provide opportunities for self-advocates to speak for themselves on the issues that most impact and affect their lives. In 2006, People First included 23 local chapters with a combined total of approximately 425 members. People First is a strong voice for increasing the number of people who can benefit from New Opportunities Waiver services and affordable and accessible homes. ● At the SABE National Conference in May 2006, DD

Council and People First board member, Willie Martin was recognized for his courage and determination

following Hurricane Katrina. ● In August 2006, People First conducted a presentation

on “Defining, Understanding, and Using Advocacy from the Self-Advocate’s Perspective” at the Louisiana Chapter of AAMR Conference.

LaCAN LaCAN (Louisiana Citizens for Action Now) is a statewide grassroots network of more than 2300 individuals, families and advocates who have worked together since 1988 advocating for a service system that supports individuals with disabilities to live in their own homes rather than having to be segregated from their communities in a facility to receive needed services. Specifically, they have advocated for implementation of Louisiana's Community and Family Support System Plan. Regional LaCAN Leaders mobilize members in their respective regions to write letters, visit their legislators, attend Legislative Committee meetings, etc.

14,768 and Growing...

Louisiana trails most of the nation in providing community supports and has one of the longest waiting lists for Home and Community Based Services waivers. There are 14,768 people with developmental disabilities on the New Opportunities Waiver (NOW) waiting list; 1624 people were added to the list in 2006. In the past six years, the legislature has appropriated funds for only 691 new NOW slots, averaging 115 slots per year. At the current rate of funding, someone added to the waiting list in 2006 would receive a NOW slot in 128 years! The Council believes it is vital to advocate for a recurring funding source dedicated to waiver services and an immediate and substantial increase in the number of NOW slots.

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Grassroots Advocacy

Sixteen people with disabilities and parents graduated from Partners in Policymaking in 2006, bringing the number of advocates the Council has trained in the last fifteen years to 319.

19 Years of LaCAN Advocacy has Resulted in: ● Passage of the Community and Family Support System Act (Act 378) in 1989 ● Legislative approval in 1991 for Louisiana's Community and Family Support System Plan required by Act 378. ● Over $15 million in SFY 2006 for state funded services

called for in the Community and Family Support System Plan. ● $270 million in SFY 2006 of state and federal funding

for the New Opportunities Waiver. 2006 Accomplishments ● Funding for 200 additional New Opportunities Waiver

slots ● Restoration of over $16.7 Million in budget cuts to the Office for Citizens with Developmental Disabilities and

the DD Council ● Passage of SB 746 (see page 6) ● Closure of Metropolitan Developmental Center

LaTEACH LaTEACH (Louisiana Together Educating All Children) is a statewide network open to parents, teachers, administrators, higher education professionals and anyone interested in promoting appropriate, inclusive education for all students. Pertinent information on laws, proposed legislation, administrative policies and other issues that impact students is provided to members through an email listserve, regular mail and phone calls. LaTEACH was established in 2005 and membership grew to over 400 people in 2006. Partners in Policymaking™ Partners in Policymaking™ is a national leadership training program for people with developmental disabilities and parents of children with developmental disabilities. It provides the most current knowledge about disability issues and develops the competencies necessary for effective advocacy to influence public policy at all levels of government. The Council provides funding to conduct the Partners in Policymaking™ training program in Louisiana each year.

NOW Waiver Slots and Budget Cuts In addition to the 600 advocates who attended the 2006 Annual Disability Rights Rally, hundreds of LaCAN members and advocates from partnering organizations attended Legislative Committee meetings in support of funding to add 800 New Opportunities Waiver slots and maintain other services for people with disabilities. With a waiting list of nearly 15,000 people, 800 additional slots would not have been enough to adequately address the waiting list, but in a legislative year that began with huge budget cuts due to the economic uncertainty created by Hurricanes Katrina and Rita, it may have been an ambitious number to request. After moving and sometimes emotional testimony in both the House Appropriations and Senate Finance Committees, funding for 200 new NOW slots was added to the budget. Advocates also succeeded in gaining funding for 100 additional Elderly and Disabled Adult Waiver slots and restoring $16.6 million in budget cuts to the Office for Citizens with Developmental Disabilities (OCDD) that would have meant reductions in Individual and Family Support and Cash Subsidy. Budget cuts of $179,395 were also restored to the DD Council budget, which avoided cuts to Families Helping Families, the Federation of Families for Children’s Mental Health and a supported living program, all Act 378 programs.

It’s Time! End the Wait!

2006 Legislative

Session And

Disability Rights Rally

Developmental Center Closure LaCAN also supported a proposal from OCDD to close two of the state’s nine developmental centers. Legislators failed to close Northwest Developmental Center but did approve plans to convert Metropolitan Developmental Center into a community based operation. Metropolitan is located in the Greater New Orleans area and there were major safety concerns for residents living in an area that is so vulnerable to hurricanes. SB 746 by Sen. Sharon Weston Broome and an identical bill, HB 1391 by Rep. Yvonne Dorsey, were both introduced at the request of the DD Council and The Arc of Louisiana to increase the odds that one of the bills would pass. SB 746 passed and provides that the proceeds from the sale of movable and immovable property previously operated by OCDD, such as Metropolitan, will stay in the DD system in a Community and Family Support System Fund to be used to expand and enhance home and community based services.

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Jim Comstock-Gallaghan, Director of the Southern Disability Law Center, and Rally Keynote Speaker and Senator Sharon Weston-Broome address a crowd

of more than 600 advocates that converged on the State Capitol steps, April 11, 2006 to send a message to legislators that “A Waiting List is Not a Service” for the 14,768 people on the NOW waiting list and “It’s Time” to reform the system to address their needs.

Emergency Preparedness Several important bills and budget amendments were passed this year to improve Louisiana’s response to the needs of individuals with disabilities in an emergency: ● $1 million was allocated for OCDD to create an evacuation shelter and multipurpose center for individuals with disabilities and the elderly on the campus of Pinecrest Developmental Center. ● HR 8 by Speaker of the House Joe Salter requested that the House Select Committee on Homeland Security study the feasibility of a statewide special needs registry to help assure the safety and welfare of persons with disabilities in a disaster. ● SB 607 by Sen. Clo Fontenot required homeland security agencies and emergency preparedness authorities to evacuate, transport, and shelter service animals along with their owners during an evacuation. ● SB 529 by Sen. Lydia Jackson regarding nursing home evacuation plans, provided some protections for residents although it did not require that plans be approved by the Department of Health and Hospitals as recommended by advocates.

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Sharing Information...

Families Helping Families Families Helping Families (FHF) is a statewide network of resource centers directed by parents of individuals with disabilities. The Council provides state funding for the general operation of the nine FHF Regional Centers. Each Center is staffed by individuals with disabilities and family members of individuals with disabilities who provide information and referrals to assist other individuals and families to navigate the complex disability service system and access the supports and services they need. The Centers also provide education and training, peer to peer support, and many other services. Each Center also maintains a resource library on site. DIAL The Council funds and operates the Disabilities Information Access Line (DIAL). Anyone in Louisiana can call 1-800-922-DIAL toll free or 1-800-256-1633 TDD for information on supports and services available for individuals with disabilities of all ages. In response to caller requests, DIAL is able to do computer searches for goods, services, or assistance, and provide callers with either on-line referrals or printed reports by mail. DIAL is able to provide services to callers who speak English, Spanish and Vietnamese, and TDD services are available for callers who are hearing impaired. ● Together, Families Helping Families and DIAL met more than 26,000 requests for information or assistance from individuals with disabilities, their families, professionals and organizations in 2006.

In addition to providing information resources and other supports to individuals with disabilities and their families, Families Helping Families Centers organize festivals and picnics that provide opportuni-ties for family fun and community outreach.

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...Reaching Out

TriAngle Newsletter The TriAngle is a free, quarterly newslet-ter funded by the Council and produced collaboratively with the Advocacy Center and the Human Development Center. The newsletter is available in regular, Braille and large type editions. Current and archived editions of the TriAngle are also available at the Council’s website: www.laddc.org. The newsletter’s distribution list of 3528 people includes individuals with disabilities, families, advocates, legislators, providers and other interested stakeholders throughout the state. Waiting List Outreach This year, the Council funded an outreach initiative to individuals on the New Opportunities Waiver (NOW) waiting list. Together with Families Helping Families and other volunteers, the Council provided information about Families Helping Families, Cash Subsidy and other resources to 2,417 people on the NOW waiting list or their family members.

Council Chairperson and fellow artist, Lynette Fontenot wowed student winners of the Council’s First Annual Inclusive Schools Art Contest. Lynette was keynote speaker at the Awards Ceremony held in Dec. 2005 in the Governor’s Press Room at the State Capitol.

Hurricane Outreach and Relief In response to Hurricanes Katrina and Rita, the Council coordinated relief efforts state-wide through FHF and other advocacy organizations, beginning with visits to temporary shelters to identify and assess the needs of individuals with disabilities and their families. Identified individuals were provided information, supplies, assistance in completing forms, locating extended family, finding housing, reconnecting to services and other supports necessary to assist in meeting their needs. ● The Council responded to over 350

emails and 1,141 calls requesting assistance.

● The Council funded regional outreach efforts that identified and assisted 219 additional families.

● Using Council funds and money donated

by Councils from across the country and other donors, the Council established an assistance fund through Families Helping Families that provided relief to 423

persons with disabilities and their families.

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Building

“Common Ground” Inclusive Recreation Project This year, the Council funded “Common Ground”, an inclusive recreation project coordinated by Bayou Land Families Helping Families (FHF). Bayou Land FHF supported Nicholls State University to make three of their existing summer camps inclusive for all children, including those with significant disabilities. A needs and interests survey conducted at the beginning of the project indicated that families were very interested in inclusive summer programs for their child with a disability and would participate if the opportunity existed. Families also rated the camp programs their child would be most interested in attending. Based on survey results, the three camps chosen for the project were: Sports and Activities, Space Adventure and Arts and Crafts. A training module, Let the Fun Begin was developed and training was provided to all camp counselors working in Nicholls’ Summer Youth Programs. The training module was also shared with parish recreation departments in the region. Lafourche and St. Charles parish recreation departments invited Bayou Land FHF to present the full training to their employees. Both parishes have demonstrated interest in making their programs more inclusive, and St. Charles is currently participating in a new inclusive recreation project that the DD Council is funding for Federal Fiscal Year 2007. The project received very positive feedback from both families and camp counselors. Camp counselors learned that even children with the most intense support needs could fully participate in the same activities as their peers without disabilities. A letter from one parent stated that her son was able to make friends with children his own age for the first time. ● Common Ground provided stipends to cover the cost of each camp for participating children with disabilities. Six children with intensive support needs participated in the summer programs and attended at least one of the 1-week camp sessions. Four children participated in more than one camp.

Through the Common Ground Project, Nicholls State University made three of their summer camps inclusive to all children.

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Capacity

Partnerships For All Children Together (Project PACT) The Council provides funding for a collaboration between the Louisiana State University Health Sciences Center Early Intervention Institute, Agenda for Children, and Families Helping Families of Greater New Orleans to enhance and expand the capacity of child care providers in the Greater New Orleans area to support and include young children with developmental delays in the same settings and activities as their peers without developmental delays. Project PACT uses a community-building process designed to establish and maintain long-term relationships across child care providers and administrators, early intervention specialists, early intervention system administrators, and families. These efforts provide opportunities for all stakeholder groups to build upon and transfer what they know about effective practices for all young children, including children with disabilities. The partnerships created by Project PACT will serve as a support network for the participating child care centers after the funding period ends. Seven training modules were developed by Project PACT. These modules have been tested and updated as necessary. The Council plans to use these training modules as the basis for a future train-the-trainer program so that child care centers throughout the state can develop the expertise to provide quality care to children with developmental delays. ● In 2006, eleven child care providers received in-depth training and technical assistance

to provide quality child care to a total of 13 children with developmental delays. ● A total of 159 child care and early intervention professionals received in-depth training

on providing quality supports to children with disabilities. Another 257 family members and professionals received basic training in early child development through Project PACT.

In 2006, Project PACT supported eleven child care centers to enroll and provide quality care to a total of thirteen children with developmental delays.

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Council Members and Staff

Individual and Family Representatives Lynette Fontenot, Chairperson, Lafayette Jared Armstrong, Houma Sandra “Sam” Beech, Shreveport Donna Breaux, Kenner Sharon Dufrene, Baton Rouge Trudye Jones, Gonzales Robin King, Montgomery Billie Ruth Kvaternik, Monroe Shelia Madison, Donaldsonville Kay Marcel, New Iberia Willie Martin, New Orleans Ida Mialaret, Metairie Johnnie Morris, Bossier City Debbie Schilling, Franklinton Marian Vigo, New Orleans

DD Network and other Advocacy Representatives Jeanne Abadie, Citizens Care Lois Simpson, Advocacy Center Phil Wilson, Human Development Center State Agency Representatives Susan Berry, Office of Public Health Kathy Kliebert, Office for Citizens with Developmental Disabilities Nanette Olivier, Department of Education William Payne, Office of Mental Health Jerry Phillips, Bureau of Health Services Financing Matt Rovira, Governor’s Office of Disability Affairs James Wallace, Louisiana Rehabilitation Services Godfrey White, Governor’s Office of Elderly Affairs

Council Staff Sandee Winchell, Executive Director Kandi Smith, Program Manager Debra Thompson, Contracts Robbie Gray, Program Monitor Robert Caulk, DIAL Information Specialist Kevin Hill, Program Monitor Juliette McMurry, DIAL Information Specialist Gracie Haggard, Executive Secretary Victoria Mack, Office Coordinator

This public document was published at a total cost of $1,703.05. 400 copies of this public document were published in this first printing at a cost of $1,703.05. The total cost of all printing of this document including reprint is $1,703.05. This document was published by the Louisiana Developmental Disabilities Council and printed by the Louisiana State Printing Office to inform the public and policy makers of issues relating to persons with developmental disabilities under authority of Louisiana Revised Statutes 28:752 and Public Law 106-402. This material was printed in accordance with the standards for printing by state agencies established pursuant to R.S. 43:31.

Louisiana Developmental Disabilities Council

Post Office Box 3455 647 Main Street

Baton Rouge, LA 70821-3455

225-342-6804 or 800-450-8108 800-922-DIAL (3425)

800-256-1633 TDD www.laddc.org