Caring for those in Need

Helping People with Disabilities Live in Their Communities – Rather Than Institutions

Sometimes individuals with disabilities end up in nursing homes or other institutional settings, even as young as in their teenage years. There are alternatives to institutional care, and supports to help keep people in their homes and communities. 

BY Lauren Agoratus, M.A. | June 2023 | Category: Summer Fun, Travel

Helping People with Disabilities Live in Their Communities – Rather Than Institutions

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

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 


Young, Disabled and Stuck in a Nursing Home for the Elderly 

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 

Home/Community Based Services 

Money Follows the Person

Managed Long Term Services and Supports 

Community Resources 

Developmental Disability Councils 

Centers for Independent Living 

Institutional Transition & Diversion 

ABCs of Nursing Home Transition 

Resources on Institutional Transition & Diversion 

State Ombudsman/State Office on Human Services or Disability  


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 ( Lauren was named a Hero Advocate by Exceptional Parent Magazine ( Archives June 2022).  

Read the article here.