In 2021, we had the privilege of welcoming Penelope and her family into our community. Since then, we’ve been able to share some of her progress in physical therapy, and celebrate each milestone along the way.

Her father, Anthony, has always been a fierce advocate for Penelope, and will stop at nothing to make sure her needs are met. One need that the family has struggled with in recent years is after-school care. Anthony told us, “For our family, this has been a major challenge and has actually negatively impacted my employment over the last two years. Fortunately, my newest employer is incredibly flexible and allows me to work from home in a pinch when Penelope's caregiver is not available.”

Although Anthony has since found a more flexible employer, he knows that there are so many other families who don’t have that option. That’s why this week, Anthony wanted to take things a few steps further.

As part of his mission to spread awareness for the lack of after-school care programs for children with disabilities in Long Island, Anthony walked 100 miles dressed head-to-toe in his firefighter gear. He invited anyone interested to join him in his walk and even drafted a petition to send to public officials requesting recognition and resources for children with special needs. In an article from News12 Long Island, Anthony stated, “If this is what it takes to get the services for her, I'll walk 1,000 miles if that's what I needed to do.”

Unfortunately, in the midst of his 100-mile walk, Anthony was confronted with another critical issue. Recently, Penelope was approved for support through CDPAP (Consumer Directed Personal Assistance Program). This state Medicaid program has made it possible for Penelope’s family to pay for an after-school caregiver.

Anthony told us, “The governor of New York State has taken aim at an integral part of CDPAP in which they are looking to eliminate Designated Representatives. For Penelope, I serve as her Designated Representative. The Designated Representative takes care of the recruitment, hiring, and other administrative duties for individuals who physically cannot do these things. By eliminating designated representatives, over 100,000 people will instantly lose eligibility, including but not limited to children, individuals with dementia, and people who are non-verbal.”

This is exactly the type of obstacle that Anthony is hoping to spread awareness of. Even more so, he hopes to bring enough attention to these issues that it makes a lasting impact for families just like his, facing many of the same adversities. To Anthony, this calls for significant policy changes.

“I knew completing the walk would be the initial and easiest step because the real challenge would be convincing elected officials with the resources and influence to create these much-needed programs. However, upon reaching the hilltop and completing the walk, I didn't realize I would be faced with Mount Everest. It has already been extremely difficult living in a world without appropriate after-school program for children with disabilities, like Penelope. However, now the governor of New York in her Executive Budget is looking to eliminate access to one of the few programs available to help us pay for her after-school care.”

Anthony’s 100-mile walk may be over, but his fight to advocate for children with disabilities is not.

Anthony, on behalf of all of us here at CC, we deeply admire and commend your incredible advocacy work. Thank you for being such a strong voice for Penelope and for everyone with a rare medical condition who has to fight to get their needs met every day.

For those interested in signing Anthony’s petition, we would encourage you to sign here.