those over 65 decreased.1 Demographic characteristics showed health disparities in black and Hispanic families, and males, making up the younger population. In addition, the younger population resided in facilities with lower "star" designations from the Centers for Medicare and Medicaid. This is despite funding increases on HCBS and MFP ("Money Follows the Person"), so more work needs to be done in this area. Although, there has been some improvement for people with developmental disabilities, this is not true for other disabilities, particularly mental health. As expected, there were state variabilities in the provision of HCBS, and these should be expanded to defer institutional care. Medicaid and other insurance case managers should identify which of their members are at risk of institutionalization. Further, case managers should contact consumers if they enter institutional care, to determine steps to return to the community.
COMMUNITY BASED SUPPORTS
How can self-advocates and their families become aware of these options? Every state has a Governor's Council on Medicaid where initiatives are discussed (see Resources). There is also a
Governor's Council on Developmental Disabilities. Another great resource are Centers for Independent Living, which helps with independent living skills and institutional diversion. The National Council on Independent Living also has resources. In addition, families and self-advocates can contact their state office on disability and some even have an Ombudsman.•
ABOUT THE AUTHOR:
Lauren Agoratus, M.A. is the NJ Coordinator for Family Voices, NJ Regional Coordinator for the Family-to-Family Health Information Center, and Product Development Coordinator for RAISE (Resources for Advocacy, Independence, Self-Determination, and Employment). She also serves as NJ representative for the Caregiver Community Action Network as a volunteer. Nationally, Lauren has served on the Center for Dignity in Healthcare for People with Disabilities transplant committee (antidiscrimination), Center for Health Care Strategies Medicaid Workgroup on Family Engagement, Family Advisor for Children & Youth with Special Health Care Needs National Research Network, National Quality Forum-Pediatric Measures Steering Committee, and Population Health for Children with Medical Complexity Project-UCLA. She has written blogs and articles nationally, including publications in 2 academic journals (pubmed.ncbi.nlm.nih.gov/?term=agoratus+l). Lauren was named a Hero Advocate by Exceptional Parent Magazine (epmagazine.com Archives June 2022).
- doi.org/10.1377/hlthaff.2022.00548
- clpc.ucsf.edu/publications/managed-long-term-services-and-supports-contract-provisions-relat ed-transition-and
NO PLACE LIKE HOME : KEEPING PEOPLE WITH DISABILITIES IN THEIR COMMUNITIES
IN THE NEWS
YOUNG, DISABLED AND STUCK IN A NURSING HOME FOR THE ELDERLY
america.aljazeera.com/articles/2013/10/2/young-disabled- andstuckinnursinghomes.html
A NEW NURSING HOME POPULATION: THE YOUNG
www.npr.org/2010/12/09/131912529/a-new-nursing-home-population-the-young
AS SENIORS' PRESENCE IN NURSING HOMES DROPS, YOUNG PEOPLE WITH DISABILITIES STUCK WITH FEW ALTERNATIVES: STUDY
STATE MEDICAID CONTACTS medicaid.gov/about-us/beneficiary-resources/index.html
HOME/COMMUNITY BASED SERVICES medicaid.gov/medicaid/home-community-based-services/index.html
MONEY FOLLOWS THE PERSON medicaid.gov/medicaid/long-term-services-supports/money-follows-person/index.html
MANAGED LONG TERM SERVICES AND SUPPORTS
www.macpac.gov/subtopic/managed-long-term-services-and-supports
DEVELOPMENTAL DISABILITY COUNCILS acl.gov/programs/aging-and-disability-networks/state-councils-developmental-dis-abilities
CENTERS FOR INDEPENDENT LIVING ilru.org/projects/cil-net/cil-center-and-association-directory
Institutional Transition & Diversion ilru.org/topics/institutional-transition-diversion
ABCs of Nursing Home Transition STATE MEDICAID CONTACTS medicaid.gov/about-us/beneficiary-resources/index.html
Resources on Institutional Transition & Diversion ilru.org/resources-institutional-transition-diversion
STATE OMBUDSMAN/STATE OFFICE ON HUMAN SERVICES OR DISABILITY www.usa.gov/disability-services