Working parents of children with significant disabilities are being forced to choose between caring for their children and keeping their jobs.

My name is Brandy VanderMallie, and I am a working mother in New York. My 9-year-old son, Jeffery, has autism and significant developmental and care needs.

Recently, Jeffery had a serious reaction to a medication that required an emergency-room visit. His symptoms returned, requiring another trip to the ER, and he needed continued supervision while the medication left his system.

My husband and I both work. I am completely commission-based, which means if I don't work, I don't get paid. My husband has already used significant FMLA throughout the year to take Jeffery to appointments and care for him when he is sick.

We do have respite workers through his services, and we are incredibly grateful for them. However, our respite workers cannot administer medication.

So when our child requires care and supervision that the available services cannot provide, what are working parents supposed to do?

We cannot leave our child without appropriate supervision.

We cannot simply stop working.

And we still have mortgages, food, utilities and other bills to pay.

This is not just our family's problem.

After I shared our experience on Facebook, the post received more than 7,000 views, 100+ shares and dozens of comments in less than 24 hours. Parents and caregivers began sharing their own experiences, showing me that families throughout New York are facing similar challenges.

New York needs another option.
KFF's 2026 analysis found that 44 states allow Medicaid payments to legally responsible relatives through at least one waiver program. Among the 47 responding states with Medicaid waivers serving people with intellectual or developmental disabilities, all 47 reported allowing payment to family caregivers under at least one circumstance.

These programs have eligibility requirements, restrictions and safeguards. We are not asking New York to automatically pay every parent.

We are asking New York to create a structured pathway for qualified parents of children with significant disabilities to be compensated for authorized extraordinary care when that care is necessary and goes beyond ordinary parental responsibilities.

This could include appropriate:

Eligibility requirements
Documentation of the child's care needs
Authorized hours
Training when appropriate
Background checks
Oversight and accountability
Periodic reassessment
We are not asking for a handout.
We are asking New York to recognize that some parents provide an extraordinary level of care because their child's disability requires it.

Parents should not have to leave the workforce, exhaust their protected leave, lose wages, or risk losing their jobs simply because the available care system cannot meet their child's needs.

We are asking Governor Kathy Hochul, the New York State Legislature, OPWDD and the Department of Health to examine how other states are addressing this issue and create a pathway that works for New York families.

Please sign and share this petition.
If you are a parent or caregiver of a child with a significant disability, tell us your story.

If you've ever had to choose between going to work and caring for your child, your voice matters.

Let's show New York that this is bigger than one family.

Facebook video highlighting real issues

New York families deserve the ability to care for their children AND keep their jobs.