Dear Virginia Department of Medical Assistance Services,

When I heard about Virginia's proposal to introduce a 56-hour weekly soft cap on Personal Assistance services for people with developmental disabilities, I felt I could not remain silent.

I am writing as a close friend of a mother who has dedicated her life to caring for her adult son with autism.

I have watched my friend's life revolve almost entirely around her son's needs. Her son cannot safely be left alone, even for a short time. She rarely has the freedom to enjoy personal time or simply relax without worrying about him.

Her son attends an adult day program for approximately six hours a day. But even during those six hours, she is constantly checking her phone. She worries about whether he might have a behavioral episode, accidentally eat something that triggers his food allergies, or experience another emergency that requires her immediate attention.

My friend is an intelligent, talented, and capable woman. She has so much to offer, yet she cannot pursue a full-time career because her son requires continuous care and supervision.

Instead, she works part-time and relies in part on income she receives as her son's caregiver to support their household.

Finding reliable outside caregivers has also been extremely difficult. Even when she manages to find someone, there have been times when the quality of care, reliability, or attitude of the caregiver made it impossible for her to feel comfortable leaving her son in that person's care.

So much of the responsibility falls back on her shoulders.

Watching her life has made me realize something that many people may not understand: families caring for adults with significant developmental disabilities often struggle to enjoy even the ordinary freedoms that others take for granted.

They cannot simply work longer hours when money becomes tight. They cannot easily take a vacation, go out for an evening, or rest when they are exhausted.

Their responsibilities do not end when the sun goes down.

This summer, I read heartbreaking news reports about a mother and her adult son with a developmental disability who were found dead in Maryland. Although the circumstances of their deaths have not been officially established, the news deeply affected me.

It made me think about my own friend and the tremendous emotional and physical burden that parents like her carry every single day.

I believe our society has a responsibility to care for these families, not leave them struggling alone.

Now, hearing that Virginia is considering a 56-hour weekly limit on Personal Assistance, even with an exception process, I am deeply concerned.

My friend already struggles to balance work, finances, and caregiving. If access to assistance becomes more limited or difficult to obtain, what is she supposed to do?

How much more can one mother be expected to sacrifice?

Instead of making support harder to access, shouldn't we be doing more to help families who have already given so much?

These parents are not asking for luxury or special treatment. They are asking for the support necessary to keep their loved ones safe while maintaining their own health, financial stability, and dignity.

I strongly oppose the proposed 56-hour soft cap. I urge Virginia to continue determining Personal Assistance hours according to each individual's actual needs and to ensure that families are not burdened by unnecessary restrictions or complicated exception procedures.

Please pay attention to these families. Please listen to their struggles. And please do not make their already difficult lives even harder.

I am speaking up because I care about my friend, her son, and every family facing similar challenges.

Thank you for taking the time to hear my concerns.

Sincerely,

A Concerned Friend and Community Member