Findings from our Healthcare Summit highlighted in Newsday article

Summit Reveals that 24,000 in Need of Services and Eventual Placement

Recently, St. Mary’s Healthcare System for Children and Family Residences and Essential Enterprises, Inc. (FREE) hosted a healthcare summit at John Jay College in Manhattan – New Horizons for Children and Young Adults with Medical Complexity in New York State – that served as a forum for advancing solutions for children and young adults with medically complex conditions and, for the first time, sought to accurately quantify the size of the most fragile children within this statewide population.

Data released at the summit commissioned by St. Mary’s Healthcare System for Children (prepared by Manatt Health Solutions and Dobson DaVanzo based on analysis of NYS Medicaid statistics) revealed there are nearly 24,000 children and young adults with MF in New York State. Moreover, 9100 of these young people are aging out of pediatric programs and services, without a clear plan for the future.

A January 2, 2016 Newsday article takes a look at the findings and examines the needs of this growing population of children and young adults.  Visit for the full story.

Age Specific Breakdown of Children with Medical Fragility in New York State*
*Source: St. Mary’s Healthcare System for Children/Manatt Health

13,200 Children with MF Age 0-20 in NYS Medicaid. Of these:
-7,700 are Age 0-11 (younger children)
-2,500 are Age 12-15 (children in need of transition planning)
-1,200 are Age 16-17 (children near aging out)
-1,800 are age 18-20 (children aging out)

10,700 Young Adults with MF Age 21-36 in NYS Medicaid. Of these:
-3,600 are Age 21-25 (recently aged out young adults)
-7,000 are Age 26-35 (aged out young adults)

Total of 9,100 are in the “Aging Out” Medically Fragile population range (Age 12-25)

The population needs assessment revealed that young adults with medical fragility face significant discontinuities and gaps in service. Currently, children with MF are typically cared for by their families at home with extensive pediatric supports; a smaller number utilize specialty pediatric facilities, such as St. Mary’s Hospital for Children in Bayside, NY, that are equipped to care for their complex needs. However, key services and supports used for children with MF are not available after age 18 or 21, leaving the young adult population and their families with a lack of options.

Despite a national and state-wide push to shift care from institutional to community settings, geriatric nursing homes are often the only option available with skilled nursing services – and even these may lack the technological and medical expertise required for this young population. The unique combination of medical, social, psychological and developmental needs simply cannot be met in a geriatric setting.

Speakers at the November 2015 “New Horizons” summit included:

  • Roger Bearden, Deputy Commissioner & General Counsel, NYS Office for People with Developmental Disabilities
  • Edwin Simpser, MD, President and CEO, St. Mary’s Healthcare System for Children
  • Christopher Long, Ed.D, President Family Residences and Essential Enterprises;
  • Parents of children with medical complexity

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This document and the conference it announces were developed under grant CFDA 93.778 from the U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services. However, the opinions, results, findings and/or interpretations of data addressed do not necessarily represent the opinions, interpretations or policy of the U.S. Department of Health and Human Services, New York State Department of Health, Office for People with Developmental Disabilities, or the Federal Government. Population assessment and group home model work is funded by the NYS OPWDD-administered BIP Transformation Fund. Remote patient monitoring work is funded by the NYS DOH-administered BIP Innovation Fund.