I have worked as a parent of a disabled woman, and as the co-leader of the UUPLAN Economic Justice Team.

As a parent, I tried to get to get an appointment with someone in Senator Toomey's office. Despite phone calls and emails, it didn't happen. He seems to be locked away from us. I wanted to tell my story as an example of reasons the Republican bill is so bad. When that failed, I went to Lancaster to hear Senator Casey. Although I didn't get to read my letter, I did get to share my thoughts to Fox 43 Harrisburg after the superb town hall. 

As a co-leader of UUPLAN, we have been working with our team to have churches get out letters and go to rallies. I know some people are doing this state-wide. We organized information rallies of key House members on the fence about their ACHA position. Most of those Reps voted against the AHCA in the end.

Some of us also went to the Media Courthouse healthcare rally sponsored by Organizing for Action, Delco Indivisible, and the Pennsylvania Health Access Network (PHAN) whom we are helping. (some pictured) This is Rep Meehan's district and he is one of the swing votes on the bill. 

My co-leader, Virginia Kirk, spoke with her job at both Toomey and Casey's office last week and sharedthat conversation with our members. I have attended three “Tuesdays with Toomey,” including one where Rev. Barber was there and participated in his Die-in.

Other UUPlan members are doing somethings state-wide. Tara Stephenson in Allentown has been active getting people out there and our Director and Administrative Assistant, Anita Mentzer and Kristi Lado get out action alerts to rallies and information on letter writing campaigns. 

       Photos from the Die-In

Read Mardys’ letter about her daughter here:

“At birth my 41 year old daughter had two heart defects and was given a 30% chance to live. As doctors at Children’s Hospital in Philadelphia strove to save her life, more irregularities in her health became apparent. The newly observed problems constantly required new interventions. Even in infancy we were getting notices about the amount of life time limits this under ten pound baby had already used up. Say no to life time limits.

As we changed jobs, we had to maintain insurance through Blue Cross. When my husband lost his job and I went back to work, I couldn’t go to a school district that had Aetna, because my sick 2 year old wouldn’t have health care for a year. Payments for pre-existing conditions need to be part of all health insurance.

When I got a job at a private school with limited BC coverage, bills mounted. This was a cheap policy that did not cover everything. Some bills I never paid and they went to collections. I cried. Mandating coverage of essential health issues must be part of any plan. Don’t leave essential coverage care items up to state politicians.

Finally, it became clear in adolescence that she had severe behavioral problems and we had her hospitalized at the Philadelphia Child Guidance Clinic. Even good private insurance did not cover all of the mental and intellectual disability help we have needed over the years.  Mental health coverage should be a mandatory part of all insurance and should be as robust as Medicaid.

Over the years, Monica has struggled with physical, mental and intellectual decline. She moved from our insurance to Medicaid and then a combination of Medicare and Medicaid. Her health issues are complex. Her doctors decide what tests and interventions she needs to survive. If the costs of those treatments should exceed the cap that Trumpcare would place on Medicaid recipients, who would pay for her care? Say NO to caps and payment deductions to Medicaid. It is pro-life to leave Medicaid unchanged.”

Connect with UUPLAN if you’d like to learn more about Mardys’ work and those in Pennsylvania. There’s strength in numbers!  

For a print version of this article, click here.