“I hope you don’t mind me asking, but how are all the proposed Medicaid cuts going to affect your daughter Jessica?” Many friends and family members have posed this question. I don’t mind if anybody asks, but I wish I had an answer.

Don’t Know

Jessica and her housemates, as well as 130,000 others with developmental disabilities in NYS, rely on Medicaid. This is not income-based; it is based on their diagnosis. One problem among a long list  is  my reply, “I don’t know.”

Medicaid cuts COULD affect Jess and her peers, but we just don’t know yet. The details are hazy, and the potential consequences are unsettling.The specifics are not specific…

Proposed Cuts Could…

“Proposed cuts could deepen waiting lists, worsen the care workforce crisis, leave millions uninsured, and destabilize our health care system. ”

I can’t stand saying, “I don’t know. ” This is our daughter’s access to health care and home and community-based services—her lifeline and daily welfare. Is it possible that New York State will cut Medicaid day habilitation, where Jessica spends her days and receives therapy each week? Group home staffing? It’s currently hard to staff Jessica’s home. I can only imagine the alternative. 

How can I say I don’t know?

This COULD be catastrophic for so many people –

A Parent’s Struggle

As a parent of a 42-year-old woman with significant disabilities, the struggle is always there.  Advocacy does not end when your family member moves into a group home.  It often becomes more prominent.

This is not an essay on politics—those who know me, know that I am not the person you seek to learn about government. I am the person whose daughter’s life and well-being depend on the services provided by Medicaid.

The response, “I don’t know how it will affect Jessica,” is unacceptable. What happens when my husband and I are no longer on the planet to advocate?

Medicaid funds life-supporting and changing services, employment support, day programs, healthcare, therapies, etc. 

Are You Still There?

I know I have already lost a lot of people who are looking for a blog that is more heartwarming, humorous, or even hopeful. 

But this is our reality – this is Jessica’s reality

What Can You Do?

What can you do? Here is a link to find out more – https://www.ancor.org/actions/preserve-i-dd-services-tell-congress-protect-medicaid/

A portion of my note to Congress -I am urging you to reject any legislation, including the House budget framework that directs the Energy and Commerce Committee to cut at least $880 billion. OUR DAUGHTER’S LIFE DEPENDS ON YOUR DECISION!

Jessica and Medicaid

How will it affect Jessica?  “I don’t know…yet”