St. Mary’s Healthcare System for Children and the Disability Opportunity Fund Help Special Needs Families Plan for the Future

Advocacy Workshop Addresses Housing Solutions & Financial Planning

St. Mary’s Healthcare System for Children, a national leader in post-acute care for children with special needs and life-limiting conditions, in collaboration with the New York State Developmental Disabilities Planning Council and the Disability Opportunity Fund, hosted a parent advocacy workshop entitled “Transition- New Housing Solutions for Children with Special Needs,” addressing long-term housing solutions and financing life care plans for children with developmental disabilities and complex medical needs.

Topics included program transitioning, self-advocacy, legislation, and financial planning focusing on affordable housing, independent living, and diverse strategies to ensure special needs children will receive continuous medical care in age-appropriate and affordable settings.

Panel of presenters included, father of 3 special needs children, Victor LaPoma, Special Care & Financial Planner from the Special Needs Planning Center at the Center for Wealth Preservation and Charlie Hammerman, President & CEO of the Disability Opportunity Fund, a national CDFI solely dedicated to advancing the needs of people with disabilities, and also a father of a child with special needs.

The workshop was well attended by over 100 participants including parents of children with special needs, service providers, and non-profit organizations, all who understand the emerging need for appropriate housing for the growing number of children who are aging out of pediatric programs.

Upon reaching their 18th birthday, medically fragile children transition to programs designed for people that are often five times their age. There are hundreds, if not thousands of young adults living in nursing homes or geriatric centers due to a void in alternative care models for this growing demographic. The geriatric programs rarely provide age-appropriate services for the young adult population and are frequently ill-equipped to address the acuity of their complex medical conditions.

Through a close partnership with The Disability Opportunity Fund (TDOF), St. Mary’s has been instrumental in drawing attention to this emerging problem and this workshop is one of many to address the growing situation.

One out of every five children born in the U.S. has some type of special healthcare need. In New York State alone that equates to over 800,000 children. These children are challenged with a wide array of conditions – many stemming from premature birth, chronic illness, or severe injury. While ongoing advances in medicine, technology, and training are helping children survive illness and injury that were thought impossible just two decades ago, more and more children require lifetime care in a suitable healthcare setting that can meet their needs.

Learn more about advocating for your child with special needs.