As Republican leadership seeks to undermine the Affordable Care Act and impose cuts to Medicaid, Alejandra’s story reminds us how critical LTSS are in allowing people with disabilities to live independently in the community and pursue meaningful work.

Alejandra Ospina is a first generation Hispanic-American known to many as, “Super Aleja.” Seated in her customized power wheelchair, this New Yorker successfully navigates crowded sidewalks and often-unreliable public transit every day, as she makes her journey to work, to her community choir rehearsal or to simply enjoy all the art and diversity Manhattan has to offer.  

Although Alejandra feels that social and medical services available to people with disabilities are often restrictive and house a culture of lowered expectations of those they serve, she has learned to make the most of the resources available to her and has lived independently for more than 17 years.

In addition to Manhattan’s city-based affordable housing program that allows Alejandra to reside in a privately-managed apartment, she also relies heavily on Medicaid to meet her health care needs. Being a full-time non-ambulatory wheelchair-user due to Cerebral Palsy, she also requires a hospital bed, shower chair and the services of a Personal Care Attendant (PCA) in order to live the productive and independent lifestyle she chooses.

Attracting and retaining PCAs can be a challenge, which Alejandra attributes to the low wages they are currently paid. Still, this Medicaid-funded service is an invaluable lifeline for her. While she utilized the services of home health agencies for a brief period of time, she greatly prefers New York City’s consumer-directed services. This allows her to find, hire, train – and sometimes fire – her PCAs herself. The fiscal intermediary, Concepts of Independence, issues her PCA’s paychecks and handles the taxes. The quality of care she receives through this program is far superior to the latter.

By successfully coordinating all of these Long-Term Support Services (LTSS), Alejandra has the freedom to pursue her career and personal goals. Currently, she is focusing on freelance work in the areas of closed captioning, transcription and translation since she is fluent in Spanish. Alejandra has also been active in her choir for the past 12 years. Her love of the performing arts now has her exploring the world of integrated dance and she is learning to play the violin.

Even with the current political climate casting a shadow of uncertainty over the LTSS Alejandra relies on, her ambitious nature remains strong. She looks forward to expanding her freelance work into a more substantial career that ideally involves a great deal of travel.

Consumer Stories

The needs and experiences of health care consumers — particularly people in marginalized or low-income communities or with complex needs and significant disabilities — are the driving force of the Center’s work. Documenting and amplifying patients’ real-life health care situations, in their own words, is central to our ability to create a health care system that works for all of us. Click below for stories from some of the consumers we work with.