Perhaps one of the most powerful roles that a parent can play for a child with special needs is that of an advocate, or, a person who publicly (and in the case of parents, tirelessly) fights for a cause or an individual.
Advocacy for children and individuals with special needs can be vitally important for a number of reasons. It can draw attention to an injustice or unfairness of a government/health policy. Advocacy can help prevent people from slipping through cracks in “the system”. Advocacy can increase access to special needs resources and it often leads others to lend support for a common cause. Most importantly, advocacy can help your family member with a disability receive the services, benefits, and other resources that enable your son or daughter to live a full life.
The following is a sampling of the resources for individuals with developmental disabilities in your area:
The Right to a Full Life NEW!
From ILO’s own Debbie Fickenscher – An upbeat account of a mother’s journey parenting twins with different disabilities. It is a tale of advocacy outlining the strategies used when working with doctors, teachers and neighbors.
It describes how a mother explored options available to her family, looking for the right “fit” and how as a family they worked on the life skills that helped her son and daughter become independent. The importance of communities and the role they play in supporting an individual is explained. The balance between safety and individual autonomy is explored. The lessons shared are instructive to parents of children with and without disabilities. Visit her website at: www.debbiefickenscher.com, learn more about the book, The Right to a Full Life at https://therighttoafulllife.com.
Advocating For Your Child – Getting Started
This article, written by Pamela Wright, MA, MSW, provides some excellent tips as to how to begin advocating for your child.
This is a non-profit dedicated to providing services to families with dependents with developmental disabilities upon the death of the parent(s) or as arranged by the family. The level of service is dependent on the family and there are fees for various services which include monitoring the day/residential program of the family member, attending annual planning meetings, and providing information and support for the remaining siblings and/or trustees.
Special Education and Advocacy
Autism Speaks has compiled a great list of resources for advocating for special education services for your children with special needs.
Self-Advocates Becoming Empowered
SABE is a national self-advocacy organization. Founded in 1990, the organization has been working hard for the full inclusion of people with developmental disabilities in the community throughout the 50 states and the world for 21 years. Their non-profit advocacy organization is run by a board of self-advocates representing 9 regions of the country.
American Association of People with Disabilities
This is the largest national cross-disability member organization in the United States. It promotes equal opportunity, economic power, independent living, and political participation for people with disabilities. Members, including people with disabilities and family, friends, and supporters, represent a powerful force for change.
PHP’s mission is to help children and adults with special needs receive the support and services they need to reach their full potential by providing information, training, and resources to build strong families and improve systems of care.
PACER Center is a parent training and information center for families of children and youth with all disabilities from birth to 21 years old. Located in Minneapolis, it services families across the nation, as well as those in Minnesota. Parents can find publications, workshops, and other resources to help make decisions about education, vocational training, employment, and other services for their children with disabilities. This is an excellent special needs resource.
PLAN Planned Lifetime Advocacy Network
A membership-based non-profit organization, established by and for families committed to ensuring the safety, security and well being of our relatives with disabilities.
National Down Syndrome Congress (NDSC)
The purpose of the NDSC is to promote the interests of people with Down syndrome and their families through advocacy, public awareness, and information. NDSC has an annual convention with separate conventions for siblings, self-advocates, and families.
Arc of Montgomery County
The Arc Montgomery County is one of the largest and oldest nonprofit organizations in Maryland and serves individuals, families and employers affected by intellectual and developmental disabilities (I/DD). Since 1958, The Arc has been the leading provider of life-long educational, residential, vocational, and support programs and resources. Through partnerships with government, businesses, schools and other nonprofit organizations, The Arc takes pride in providing award-winning services and advocacy that builds and strengthens the entire community.
Arc of Maryland
With approximately 7,000 members throughout Maryland, The Arc Maryland is the largest and strongest statewide advocacy organization advocating on behalf of and with persons with intellectual and developmental disabilities and their families in Maryland. Our membership includes people with developmental disabilities, parents and other family members, educators, professionals, and interested persons from the general public.
National Down Syndrome Society (NDSS)
The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down Syndrome. The NDSS sponsors Buddy Walks to raise awareness in local communities across the USA.
Quality Trust is an independent, non-profit advocacy organization focused on improving the lives of children and adults with disabilities and their families. We work with individuals and family members to solve problems, identify opportunities for learning and contribution and find creative ways to minimize “differences” and make the most of each person’s abilities.
The Arc of the District of Columbia
The Arc of DC advocates for the rights and full community participation of all people with intellectual and developmental disabilities. Together with our network of members, we improve systems of supports and services, connect families, inspire communication and influence public policy.
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