An 18-year-old young man was hospitalized and his family asked for an NG (nasogastric) tube, as he was having trouble eating. The hospital discharged him without it and against the family’s wishes, sent him to a nursing home, where he got aspiration pneumonia and died.
There are other options. One determined mom, Julie Beckett, fought against having her child institutionalized. It was actually determined more cost effective to keep her daughter at home and the Katie Beckett waiver was created under Medicaid (Julie was named a Hero Advocate by Exceptional Parent Magazine; see https://reader.mediawiremobile.com/epmagazine/issues/207309/viewer?page=31).
Years ago, some states created settings for people with disabilities, who were not helped before. However, although innovative at the time, it later resulted in segregating people with disabilities. Medicaid was originally paying for care in these separate facilities. Later, Home and Community Based Services (HCBS) was seen as better and mutually beneficial. To Medicaid, it was cost-effective, and it allowed Medicaid enrollees to stay in their homes and communities, with appropriate supports. These supports included help with personal care, activities of daily living, and even nursing.
Now with the Olmstead decision against segregated discrimination of people with disabilities, Medicaid Home and Community Based Services (HCBS), Managed Long-Term Services and Supports, and “Money Follows the Person” (MFP) programs, there are better options.
Young people with disabilities in institutional care
Sadly, the proportion of younger people with disabilities in nursing homes has actually increased, even as admissions for 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.
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
http://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
www.mcknights.com/news/as-seniors-presence-in-nursing-homes-drops-young-people-with-disabilities-stuck-with-few-alternatives-study/
State Medicaid Contacts
www.medicaid.gov/about-us/beneficiary-resources/index.html
Home/Community Based Services
www.medicaid.gov/medicaid/home-community-based-services/index.html
Money Follows the Person
www.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
Community Resources
Developmental Disability Councils
https://acl.gov/programs/aging-and-disability-networks/state-councils-developmental-disabilities
Centers for Independent Living
www.ilru.org/projects/cil-net/cil-center-and-association-directory
Institutional Transition & Diversion
www.ilru.org/topics/institutional-transition-diversion
ABCs of Nursing Home Transition
www.ilru.org/abcs-nursing-home-transition-orientation-manual-for-new-transition-facilitators
Resources on Institutional Transition & Diversion
www.ilru.org/resources-institutional-transition-diversion
State Ombudsman/State Office on Human Services or Disability
www.usa.gov/disability-services.
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 (https://pubmed.ncbi.nlm.nih.gov/?term=agoratus+l). Lauren was named a Hero Advocate by Exceptional Parent Magazine (www.epmagazine.com Archives June 2022).
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