Advocacy on Behalf of Children with Developmental Disabilities

I believe in the need for supports and services that provides home and community based services for children with disabilities as opposed to out of home placement. Many children with developmental disabilities have certain needs far different than the needs of their typical peers. Yet children with developmental disabilities need the same things as their typical peers -- family, friends, love, support, happiness, etc.

Home and community based services are less costly than out of home placement (both provided through Medicaid) and allows children with disabilities the opportunity to live and grow up in a loving, nurturing family environment, as any child should. Some specific programs that I advocate on behalf of:

Louisiana's Community and Family Support System Plan which provides a variety of support and services at home for children and adults with developmental disabilities
Louisiana's Medicaid Community Home Based Waiver which currently called the "New Opportunities Waiver (NOW) - provides services for children and adults with developmental disabilities to live at home. Family income and/or resources are considered only for the first month; however the individual's with developmental disabilities income and/or resources are considered. This program provides the individual with Medicaid, as well as the following services: respite, personal care assistance, substitute family care, residential habilitation, habilitation/supported employment, pre-vocational habilitation, day habilitation, environmental modifications, personal emergency response systems, and assistive services.
Tax Equity Fiscal Responsibility Act (TEFRA) - TEFRA is a program for children with severe disabilities under the age of nineteen (19) years of age to receive care at home. TEFRA provides Medicaid to the child without regards to parental income.
Cash Subsidy - The cash subsidy is a component of Louisiana's Community and Family Support System Plan to help offset the extraordinary cost of raising a child with severe disabilities. It provides $258 per month to families of children with severe disabilities, regardless of the family's income and/or resources. Families eligible will be those families with children ages birth to 18 years of age who meet the Department of Education's Bulletin 1508 criteria for the handicapping conditions of autism, deaf/blind, profoundly mentally handicapped, severely mentally handicapped and multi handicapped. Children who meet the definitions of severely emotionally handicapped, orthopedically handicapped, health impaired, handicapped infants and toddlers and non-categorical pre-school will be screened to determine the severity of their disability.
Individuals with Disabilities Education Act (IDEA) which provides children with disabilities the right to a free and appropriate education.
Supplemental Security Income (SSI) children's program provides a cash benefit and health benefit for children with disabilities who meet the eligibility criteria

Activities ...

Developed and maintain an advocacy website for Louisiana Citizens for Action Now (LaCAN) and one for the Opelousas Area Cerebral Palsy Clinic.
Volunteer at the Opelousas Area Cerebral Palsy Clinic, non-profit organization that provides free physical therapy to children with cerebral palsy. Also active in the Clinic's fundraising activities.>
To help educate the public about the needs of children with disabilities and some of the obstacles that sometimes stand in their way, communicate these issues through local broadcast and print media. Also communicate this to various civic groups and organization. Have also spoken on behalf of our local United Way, which provides funds to the Opelousas Area Cerebral Palsy Clinic and other local organizations.
Organized an effort to get wheelchair swings and other handicapped accessible playground equipment at our two (2) city parks so those children with disabilities could have playground equipment to play on.
Co-started a support group for parents of children with disabilities called SPUNK (Supporting Parents of Unique Needs Kids).
To help families in St. Landry Parish (Louisiana) find resources available to their child with disabilities, developed a "Children with Developmental Disabilities Community Resource Guide". Made this available to local pediatricians, hospitals, support groups, etc. so parents could have access to it.
Organized three town meetings with Louisiana state legislators to communicate the needs of children with developmental disabilities and their families so that they can be better informed to make necessary decisions in the state legislature that will affect these children's lives.
Concerned that candidates of Louisiana's 7th Congressional District be aware of the issues facing children with disabilities, organized a candidate forum to inquire into the candidates position regarding issues affecting children with developmental disabilities. (read statement)

Advocacy Highlights

January 1995 - testified against drastic cuts to the Supplemental Security Income (SSI) ( read testimony) program for children with disabilities before the congressional House Ways and Means Subcommittee on Human Resources in Washington DC.
March 1995 - spoke at a press conference sponsored by the Children's Defense Fund in Washington, DC against cuts to the SSI program for children with disabilities.
April 1995 - spoke at a Medicaid press conference sponsored by Louisiana Health Care Campaign in Baton Rouge, LA concerning Louisiana's Medicaid program for children with disabilities.
June 1995 - spoke at a press conference sponsored by Families USA in Washington, DC regarding the need for long term care through Medicaid (as opposed to out of home placement) (read testimony)
November 1997 - spoke at a local press conference sponsored by Acadiana Legal Services in Lafayette, LA encouraging parents to use their right to appeal if their child lost Supplemental Security Income (SSI) benefits due to changes in SSI eligibility.
January 1998 - spoke in New Orleans, LA at public hearing "Meeting the Unique Needs of Children and Youth with Disabilities from Minority and Rural Communities" sponsored by National Council on Disability (read testimony)

Member of...

Since 1991 - Louisiana Citizens for Action Now (LaCAN), a grassroots network of families and advocates that support home and community based services for children and adults with developmental disabilities. Regional teamleader for LaCAN from January 1996 to June 1997; March 2000 - November 2000; Webmistress January 2000 - present.
Since 1992 - Families Helping Families of Acadiana, regional information resource and referral center for families who have children with special needs or who have disabilities themselves.
Since 1994 - Family Voices, national grassroots advocacy group that speaks on the special health care needs of children.
1992 - 1994 - Region IV Family Support Advisory Council which deals with implementation of the Community and Family Support System; co-chair.
1996 - Regional Advisory Committee for the President's Council on Mental Retardation
1991 - 1996 - Board member of the Opelousas Area Cerebral Palsy Clinic, a non-profit organization providing free physical therapy to children with cerebral palsy.
Since 1991 - volunteer at the Opelousas Area Cerebral Palsy Clinic.