21 & Change pursues public policy issues for the Down syndrome community and others who are developmentally disabled in order to advocate for their rights.  We integrate this effort with the National Down Syndrome Society © DS-Ambassador program, the National Down Syndrome Congress, and the Council of Parent Attorneys and Advocates.

Our efforts span the local, state and federal levels to address their issues, advocate for support, and promote social and legal change.  With the help of like-minded parents, self-advocates and other supporters, our intent is to bring these issues to light with their political representatives.  We will also educate the community on Down syndrome and other developmental disabilities to raise understanding and promote acceptance.

On the federal level, our priorities will closely mirror those of the national level organizations.  They are working everyday on Capitol Hill and across our Nation to protect and advance the rights of individuals with Down syndrome.  Following their lead and building support in every Congressional district and State is vital to this effort.

On the State level, we will address issues such as education, inclusion, support for the Gardiner and McKay scholarship programs, and restructuring of the Florida Down Syndrome Information Act and the language used by the Florida Birth Defects Registry concerning Down syndrome.

Child with down syndrome at beauty pageant

Our 2018 Priorities for Federal Issues:

1. The Transition to Integrated, Meaningful Employment (TIME) Act (HR 1377)

Legislation like the TIME Act recognizes that workers with disabilities have the potential to succeed in integrated, meaningful, competitive employment settings and will get paid real wages for real pay.

2. Retention of Protections of the Individuals with Disabilities Education Act (2004)

Recent actions by the federal Department of Education have endangered or begun to erode hard-won protections for the right to a “free appropriate public education” in the “least restrictive environment” for individuals with disabilities.

3. Congressional Task Force on Down Syndrome

Made up of U.S. Senators and Representatives, this Task Force works with national and local Down syndrome groups to develop educational, medical and employment-related initiatives that support and expand opportunities for individuals with Down syndrome.  It also identifies and works to remove barriers in the law for people with intellectual disabilities.  Florida only has three members of Congress representing our State on this vital effort.

Our 2018 Priorities for State Issues:

1. Inclusive Education

Consistent with our #2 priority for federal level issues, our state level #1 priority is for inclusive education.  We will focus on this issue through special education advocacy by supporting parents, holding schools accountable, and pursuing public policy issues at the state level that erode or endanger the protection of our children’s rights under the Individuals with Disabilities Act (IDEA) of 2004 and the Every Student Succeeds Act (ESSA)

2. Florida Down Syndrome Information Act

The State’s effort to provide parents with information regarding Down syndrome falls well short of its intended goal.  Hard, cold medical facts alone are insufficient information for parents or individuals faced with making important decisions and raising children with Down syndrome.  This type of generalized info only serves to stereotype individuals with Down syndrome and subliminally remove them from the worth, the dignity, and the right of being an individual.  Our parents and our children deserve more than this.

3.Florida Birth Defects Registry

The language used in this registry speaks only to negative outcomes.  If that were not enough, it goes on to cite a statistic that “approximately 280 children are born with Down syndrome in Florida each year, corresponding to $126 million in total lifetime medical, non-medical, and indirect costs.”  Our families and our children deserve to be treated fairly, with dignity and respect.  No one has the right to place a ‘price tag’ on our children and insinuate how they are a burden to society.

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