Health Care Access Project

Law student at a Health Care Access Project videoconference hearing

       The Health Care Access Project (HCAP) advocates for two groups of children: fragile children (children on life support) and developmentally delayed children (mainly cerebral palsy, autism, and mental retardation). The goal of the project is to provide these two groups of children with the services they are legally entitled to so that they can remain integrated in their communities. Each semester 5-6 law students work on the project to protect the Medicaid and Disability rights of the children. 

       The Health Care Access Project is part of the Children’s Advocacy Clinic. The Project is directed and taught by Professor Paolo Annino. It is graded as Pass/Fail and can be taken for 2-4 credit hours.  No certification is required.

Highlights of the Health Care Access Project

Federal Class Action Challenging the State's Placement
of Fragile Children in Geriatric Nursing Homes

       On March 13, 2012, the HCAP filed two separate federal class action lawsuits against the state Medicaid agency, because it is systematically reducing nursing hours for medically fragile children at home.  

       The first federal class action suit represents children who are at risk of institutionalization.  There are currently 5,000 medically fragile children who receive Medicaid services in the State of Florida who are at risk of institutionalization. The HCAP is demanding that the state provide the medically necessary services to these children so that they can remain at their homes and in their communities.

       The second federal class action suit represents children who are currently institutionalized. There are 250 medically fragile children who are institutionalized in geriatric nursing homes. The HCAP is demanding that the state provide the medically necessary services to these children so that they can be reintegrated back into the community and return home with their families. The Department of Justice recently filed a Statement of Interest in support of the medically fragile children.

       Because this is a statewide issue affecting thousands of children, the HCAP has teamed up with the North Florida Center for Equal Justice and private disability rights attorney Matthew Dietz. 

Medically Fragile Child: Chris

(L-R): Angela Wuerth, Jennifer Robinson, Carolyn Devita and Haley Van Erem pose with a client in Bristol, Florida, during a visit to interview clients.

        Chris is an eight year old child who has a rare genetic disease called Hurler’s Syndrome. The only way Chris can breathe is through a tracheostomy or trach tube, inserted through a perforation in his throat. Every five minutes, his trach tube must be suctioned out or he would die from choking on a buildup of his mucous. Chris is also unable to speak and walk. Chris receives 24/7 nursing care in his home, providing him and his parents with the assistance they need so that he may live with his family at home. Chris is an active happy little boy. Over the years, the Agency for Health Care Administration has tried thirteen different times to reduce Chris’ nursing care from 24 hours a day. The HCAP took on Chris’ case and has successfully resolved every attempt by the state to reduce his benefits, securing 24 hour nursing care for Chris each time.

Media

Amicus Brief in the United States Supreme Court

       The State of Florida has 3.8 million uninsured. 687,300 of the uninsured are children. In passing the Affordable Care Act, Congress found that the lack of insurance “shortens life-span.”  The Health Care Access Project filed an Amicus Brief in the United States Supreme Court in support of the Affordable Care Act. The Supreme Court ruled in favor of the Affordable Care Act. Children and adults will no longer be denied insurance because of pre-existing conditions (e.g. diabetes, asthma, pregnancy, etc.); children will now be covered by their family plan until the age of 26; private employers will be required to provide health coverage, etc. 

  • The following link is an op-ed piece submitted by HCAP student Michael Vaghaiwalla to the Orlando Sentinel in August 2012. 
  • To view a copy of the brief filed in the United States Supreme Court, click here.

Protecting the Rights of Fragile Children

       The HCAP filed a rule challenge against the state Medicaid agency. The agency proposed a Home Health Services Handbook that would reduce nursing hours from 24 hours a day to just 12 hours for medically fragile children at home. There are currently 5,000 medically fragile children who receive Medicaid services in the State of Florida who are at risk of institutionalization. There are 250 medically fragile children in Florida’s geriatric nursing homes. 

       After filing a rule challenge against the state, the HCAP prevailed: the Agency will not be capping private duty nursing hours.

Opening the Door for Thousands of Asperger Children
to Receive Developmental Services

       The Center for Disease Control reports 1 out of 89 children are diagnosed with autism spectrum disorder. Asperger is a type of autism. The state proposed a rule which excludes Asperger from the definition of Autism. HCAP challenges this proposed rule.

       After two years, HCAP finally litigated this issue at the Division of Administrative Hearings in January 2012. Two of the HCAP’s students advocated on behalf of our client and fully participated in the hearing, including opening statements and direct and cross examinations. The Administrative Law Judge issued an order finding for the state. Recently, the HCAP appealed this final order to the First District Court of Appeal.

       Because this is a statewide issue involving potentially thousands of children, the North Florida Center for Equal Justice, the Florida Coastal Law School Disabilities and Public Benefits Clinic, and  Disability Rights, Florida along with the HCAP have formed a team to open the door for services for Asperger children.