Before I even understood what Capitol Day was, Dr. Penni Sweetenburg-Lee, Director of the Partners in Policymaking Advocacy Training Program, asked all of us new students to write to our elected officials and invite them to attend. I felt completely out of my league. Not only did I not know what Capitol Day was, but I also didn’t know who my elected officials were. I quickly figured out how to look them up, used the form letter provided by my instructor, and printed and mailed each of my representatives an invitation- one to Delegate Wendy Gooditis and one to Senator Jill Vogel.
To be honest, I was really uncomfortable sending those letters. I felt unexceptional as a person and hated the thought of bothering such busy and important public figures. Surely, they wouldn’t want to hear from me, let alone be invited to an event where I would be speaking. And to be even more honest, I have to admit that I secretly hoped that they just wouldn’t respond. Yes, I had joined an advocacy training program, but I still hadn’t moved beyond wanting it to be somebody else’s responsibility to make positive change in the world- not because I didn’t want to do my part, but because I was afraid. Just plain afraid. Clearly, I hadn’t caught the vision of what Partners in Policymaking was all about. But despite my trepidation, writing those letters was a requirement for the class, so I sent them off anyway.
Next on the agenda, I had to pick an advocacy topic. Each of us in the class, as someone with a disability or the parent of someone with a disability, had heavy concerns weighing on us. As we discussed possible topics, Dr. Penni counseled us, “Whatever keeps you up at night, that is your advocacy topic.”
I knew immediately what mine would be.
My youngest daughter was ten years old and she had both Charge Syndrome and Lennox-Gastaut Syndrome. I had been her primary caregiver for her entire life and it had prevented me from being able to successfully work outside my home, which made things difficult for our family financially. We had a series of wonderful attendants who came into our home over the years and got paid to help me care for my daughter through the Virginia Medicaid Waiver, but I was never allowed to get paid myself, even though I was doing exactly what they were doing. Until the pandemic hit, that is…
When COVID-19 swept the globe and the United States Government put the Public Health Emergency in place, they also authorized states to use what’s known as Appendix K, a series of Medicaid flexibilities that help vulnerable populations during such emergencies. One of those flexibilities was that parents could now be paid to care for their own children with disabilities.
The money made a difference immediately. But we knew from the outset it was temporary, scheduled to expire six months after the Public Health Emergency ended. The first date we were given was August of 2021. Then it was extended to October. As that date neared, it got pushed back again, this time to April of 2022. I didn’t want the pandemic to go on forever, but every time that date got pushed back, I breathed a sigh of relief.
And so, as Dr. Penni counseled us to select an advocacy topic that kept us up at night, I knew that this would be mine. It was hard for me to believe that, within the context of a training class, I could actually make a difference, but I committed to myself that I would at least try.
So, after selecting “Making the Appendix K flexibilities a permanent option” as my official advocacy topic, the next item on my to-do list was to schedule appointments to meet with my legislators. For me, this is when it got real. If I had felt nervous about inviting them to Capitol Day, you can only imagine how I felt at the thought of having to speak with them one on one.
But again, it was a requirement. There was no passing this course without following each step, so on September 22nd, I sent an email to the offices of both my elected officials, and two days later, I received an email from Mariah Bowman, Chief of Staff for Delegate Gooditis, thanking me for reaching out, acknowledging that their office had received my invitation to Capital Day, and asking when a good time would be to schedule an appointment.
Crap. She actually wanted to meet with me. Well, her Chief of Staff anyway. Just as intimidating. So, I took a deep breath, emailed her back, and made an appointment to connect via Zoom the following week.
Later that day I received a response from Jenna Moon, a member of Senator Vogel’s staff. She said she would be happy to set up an appointment for me to meet with Senator Vogel, but wondered if I would be willing to tell her a little bit about my concerns. So, I sent her a long email and explained in detail how imperative it was for my family that Appendix K be extended permanently. Jenna responded enthusiastically, thanked me for my detailed explanation, and said she would get back to me soon.
On September 29th, I met with Mariah Bowman. Because I was so nervous, I asked if I could read a prepared statement that we could then discuss. She was very gracious and sat and took notes as I spoke. When I was through, it was clear her interest had been piqued. She asked question after question, trying to understand what Appendix K was, how it affected our family, and what I thought could be done to make it permanent. She admitted that prior to our conversation, she had been completely unaware of Appendix K and its impact on families, and was confident Delegate Gooditis hadn’t heard of it either. As we concluded, she thanked me for educating her and she promised to relay all of the information I had shared with Delegate Gooditis. She also promised that she would delve into research and get back to me soon regarding whether or not she thought they could help.
As I got off the call, I was, quite frankly, amazed. I hadn’t known it was that simple. I didn’t know that what I thought and experienced in my life mattered to my elected officials. I knew in theory that they were there to serve me, but I had always considered it to be in an arbitrary way- not personally- not in a way that might affect the daily life of my family.
So that was my first major lesson of this experience. My elected officials are there to serve me. I have a right to reach out to them and ask for their help. And if I’m brave enough to put myself out there, I might be the one to educate them.
In the early days of October, I continued to do research and sent any information I found over to Mariah Bowman. Each time she thanked me and filled me in on what she was doing on her end.
Around that time, I received an email from Meghan Ashburn, a fellow parent advocate in the Partners in Policymaking program. In one of our previous PIP meetings, she had taken note of all the parents who were advocating for the permanent extension of Appendix K, and she wondered if we all might want to work together. She, Catherine Rey, Kate Oppe, and I (as well as several other parent advocates who ultimately chose other topics for their legislative project) exchanged emails and had zoom conferences periodically to share ideas and research, and to offer support.
Having those three moms in my corner was imperative to my ability to navigate the system and gain confidence that I could make a difference. We were all beginners, but as we shared what little information we had with each other, our cache of knowledge and resources grew.
I think we all felt like little Davids up against a giant Goliath. Parents had been asking DMAS (the Department of Medical Assistant Services) to allow them to be paid caregivers for their own children with disabilities for years. We were not the first to advocate for this, and surely, we wouldn’t be the last. None of us was under the illusion that we could perform miracles, but we knew we had to try.
We were fortunate in the following weeks to have several important people willing to engage with us in conversation. Lucy Cantrell, from The Arc of Virginia, advised us regarding the importance of using accurate and precise language in our advocacy work. And Teri Morgan, Executive Director of the Virginia Board for People with Disabilities, counseled us regarding timing.
“I do think that it is a good time to advocate for the continuation of allowing parents of children under 18 to be the paid attendant,” she said in an email. “In Medicaid terms, this is called… ‘legally responsible persons’… Virginia Medicaid is able to allow this due to the approved Appendix K application. But, to make it permanent, DMAS would need to amend its waiver applications with the Centers for Medicare and Medicaid Services….”
“There are many varying opinions about parents of minors being the paid attendant. I think there’s a case to be made based on the direct care workforce crisis — which isn’t going to get better soon…. A lot of education would need to be done about why this is good for families. Sometimes a parent is not able to work outside of the home because of the supports their child needs — this option can add stability to the family unit, both in terms of services provided and financial stability. [But] it will be a big hurdle to overcome the policy concerns of Medicaid and others….”
She then helped us strategize, “In my opinion, the combination of personal story… with data and… policy recommendations is most effective. I think speaking to how you and your family have benefitted from [Appendix K]… is an important perspective to share. And… speaking to the impact it may have on… your family’s stability.”
I took the information I was learning and applied it to the writing of my Capitol Day speech. Since my initial confusion, I had learned that Capitol Day was an event where our elected officials were invited to form a mock legislative panel and listen to us students in the Partners in Policymaking program deliver our three-minute testimonies on our chosen advocacy topics. The purpose of the event was to give advocacy trainees practice advocating in front of real elected officials.
In my testimony, I planned to share a brief explanation of both the nature of the Appendix K flexibilities and the challenges my daughter faced which prevented me from working outside the home. And then I planned to focus the bulk of my testimony on the plight of single parents and how impossible it was for them to earn an income and care for their vulnerable children. I planned to argue that “if the Department of Justice [had] indeed expanded the understanding of [the Supreme Court ruling] Olmstead v. L.C. from getting people out of institutions, to assisting people to remain in their homes, then allowing parents to be their own child’s paid caregiver [had to be] part of that assistance. For some parents, it [was] the only way to earn an income and keep their children in their own homes.”
Few people knew, but in the Fall of 2021, I was about to go through some difficult changes in my own life. My marriage was on the verge of ending, and as my involvement with Partners in Policymaking began, I felt very uncertain about what my future would look like. But I was confident I was making the right choice and as I tackled this speech advocating for parents to be paid caregivers, I knew I had to think of the single parent. After all, I was about to become one.
In the meantime, all tidbits of information I came across, either through my own research, or that which was being shared by my fellow advocates, I sent over to Mariah Bowman in Delegate Gooditis’ office.
In mid-October, Catherine shared with our group that she and Kate (who lived in the same senate district) had a joint meeting with their senator, Senator Hashmi, who suggested to them that it would be wise for all of us to testify at the next Virginia Disability Commission meeting which would be held the following month. That, to me, sounded like the most daunting thing to date. Testify? As in, actually, testify? In front of a real legislative commission? I couldn’t wrap my head around it. But of course, I told Catherine I’d be happy to do it, and then went back to focusing on my mock testimony that I was preparing to deliver in front of our mock legislative panel on Capitol Day.
As the first weekend of November commenced, our entire PIP class was ready for our big day, but we were all on edge. Neither of my elected officials had accepted my invitation to attend, which initially was a relief to me, but at the last minute, I received an email from Mariah Bowman telling me that she would be happy to attend in Delegate Gooditis’ stead, so I found the link and sent it to her.
Capitol Day ended up being one of the most moving days of my life. As I listened to my fellow advocates speak about issues that not only kept them up at night, but that felt like life or death to them, just like my issue did to me, it was difficult not to become emotional. I, of course, was especially moved by the testimonies of my little team of moms, Meghan, Kate, and Catherine. Their stories were so similar to mine, yet with their own pain, and their own frustration, and their own heartache. The details may have been different, but the resulting anxiety and sleepless nights were the same. I found myself becoming more and more emotional as the day proceeded.
And I wasn’t the only one. After Kate gave her testimony, something unusual happened in that her delegate, Delegate Robert Bell, stopped the proceedings and took the time to talk to Kate about her circumstances with her son. Delegate Bell then shared with the class his own experiences being the father of a now-adult child with autism, and he basically promised Kate, and the rest of us, that he would do everything in his power to make the flexibilities allowed under Appendix K a permanent option for parents. He said he thought it was ludicrous that it had taken a pandemic to get parents what they needed, and he wanted to make sure this option was not taken away from them.
We were stunned. This was supposed to be a mock legislative panel. Not a real one.
But the testimonies weren’t over, and so the rest of us continued. By the time I spoke, I was so overwhelmed by the power of all of our collective voices, that when I opened my mouth to speak, my emotions came out instead! Was I crying? I couldn’t actually be crying! This was Capitol Day! I had been practicing this speech for weeks! How could I possibly be crying?
I reassured my fifteen-year-old later when I was recounting the story that I hadn’t ugly cried. I just had a very emotional voice as I spoke. She was still horrified on my behalf. But, I explained, I just pushed through until I got all my words out. Thankfully my fellow advocates reassured me later that my emotions made my testimony more powerful, not less, and in fact, when Mariah Bowman followed up with me that afternoon, her words confirmed their reassurances. She told me that my testimony was “moving and powerfully delivered.” And she said she looked forward to our continued collaboration on “this important issue.”
Several other people in attendance that day would prove to be imperative to the remarkable events that occurred in the following months. Senator Adam Ebbin sat- mostly quiet- but listened intently to each word that was spoken, taking notes, and making several encouraging remarks throughout. And Tonya Milling, Executive Director of The Arc of Virginia, also attended that day.
Prior to Capitol Day, The Arc of Virginia, arguably the most influential advocacy organization serving the disability community in the Commonwealth, had already drafted its Legislative Agenda for the 2022 General Assembly Session. But after Capitol Day, they decided to go back and add our issue- that of Parents as Paid Caregivers- to The Arc’s agenda! Because of what we had said! Our little group of moms! So, following the event, Tonya Milling got directly involved with our little team of advocates-in-training and helped us with our efforts surrounding Appendix K. Her guidance and support proved imperative to the rest of us knowing what we should be doing as we moved forward.
Thankfully during this time some of our anxiety was eased when we learned that the Public Health Emergency had been extended yet again, which meant Appendix K was also extended, this time through July of 2022. We all breathed a collective sigh of relief knowing we had just been given a few more months. But we knew it wasn’t enough. We had to figure out how to make it permanent. So, we all went back to our elected officials to try to drum up support for Delegate Bell.
I sent an email to Senator Jill Vogel’s office, who I had not heard back from in the two months since our initial communication in September. “Hello Senator Vogel,” I began, “I wanted to follow up on our previous thread and make you aware that Delegate Robert Bell is sponsoring a bill to make permanent the temporary measures granted through Appendix K that allow parents of children with disabilities to be their own child’s paid caregiver. I’m writing to ask you to add your voice to his and help get this bill passed. It would mean so much to so many Virginia families who not only carry the burden of caring for their disabled loved ones but who are also unable to be gainfully employed because of it. It makes no difference to the state Medicaid budget if a hired caregiver is getting paid to care for a child with disabilities, or if a parent is getting paid. And in light of the state-wide carer shortage right now, it is imperative that parents be allowed to take on that paid caregiving role. Thank you in advance for any support you can offer Delegate Bell on this important issue.”
It was mere minutes before Jenna Moon responded. “Susannah, I am so happy to hear this! We still have not gotten together to discuss our bills for the upcoming session, but I am adding this to our list to discuss soon. What is your phone number? I have information on the current law that I had asked for in September from legislative services and will get that to Senator Vogel along with your request. I will also have her reach out to Delegate Bell to discuss what language he is putting in.”
This was another important lesson to me during this process. It was easy to assume when I hadn’t heard back from Senator Vogel’s office in September, that they simply were not interested in this issue. But what this exchange taught me was that it wasn’t that they weren’t interested, it was just that they were busy! And they were all too happy to hear from me again and to be reminded of how important this issue was to me.
Another important lesson came from Jenna Moon’s acknowledgment that I had just provided them information that they previously did not have. Before this experience, I assumed that elected officials somehow knew what other elected officials were up to. But of course, that’s not always possible. As it turned out, the information I shared with Senator Vogel’s office was imperative to their ability to help me. I learned how much impact I could have on the process simply by keeping my elected officials informed regarding the issues that I cared about.
On the evening of November 16th, The Arc of Virginia held their Legislative Rally, and it was thrilling to hear Tonya Milling tell the hundreds of virtual attendees from the various disability communities throughout the Commonwealth of Virginia that, due to the advocacy of current students in the Partners in Policymaking Advocacy Training Program, that they had added ‘Parents as Paid Caregivers’ to their official 2022 General Assembly Legislative Agenda!
Just two days later, on November 18th, the Virginia Disability Commission meeting was finally held. All of us had prepared to speak, but because the date and time were announced just days before the meeting, some in the group had conflicts and couldn’t attend. It ended up being just Kate and me, as well as another advocate, James Shea, who was not part of the Partners in Policymaking program, but who had heard about our efforts through Catherine and decided to join our group. James’s daughter Lydia, who had had disabilities, had recently passed away, and he wanted to advocate on behalf of other families regarding Appendix K as a way of honoring his late daughter.
The night before the meeting, Tonya scheduled a Zoom call with us to strategize. Kate shared what she’d learned from a recent phone call she’d had with Delegate Bell, and Tonya shared that The Arc had heard from Delegate Bell’s office as well and were informed that this would likely not be a bill, but a budget amendment instead. The processes were different, she explained, but had the potential to be just as effective. I shared with the group that Senator Vogel would soon be reaching out to Delegate Bell’s office to add her support. Tonya was thrilled and explained how vital it was that we get support in both the House of Delegates and the State Senate. She hoped that perhaps Senator Vogel would be a good fit for patronage, along with Senator Ebbin.
The next day, Kate, James, and I testified before the Virginia Disability Commission, and those who were unable to attend submitted written comment for the committee to later review. Our hope, as counseled by Tonya, was to help shape the direction the committee chose to go in their choice of legislation to back for the upcoming General Assembly. Thankfully, the response we received from them was positive. Several sitting members addressed us directly after we spoke, but I’ll always remember what Chairwoman Kaye Kory said directly to me. She thanked me for helping them understand the urgency of this issue, and then she said, “Don’t stop fighting for this until you get it.”
That was powerful. It drove home two important points. One- that even though elected officials have a lot of power, they don’t have total control, and there is no way they can predict beforehand if a piece of legislation will pass. And two- never give up. Ever.
The week of Thanksgiving, Mariah Bowman reached out to let me know that their office had requested a bill draft for the changes we were advocating for and that they expected the draft to be back by early January. She confirmed that Delegate Gooditis planned on carrying the bill as well!
Wow! It was official. My delegate was co-sponsoring the budget amendment for the Virginia House of Representatives along with Delegate Bell. My delegate! Mine! Someone who hadn’t even heard of Appendix K two months prior until I contacted her office and educated her on the issue. I did that! Me! Unexceptional me!
I quickly responded and said, “Mariah! I cannot tell you how much this means to me!!!! The words THANK YOU are so inadequate. I am profoundly grateful. Please express my gratitude to Delegate Gooditis. This is such fantastic news…”
When you are that grateful, all professionalism goes out the window.
And as if I couldn’t be any more excited, three days later I received the following email from Jenna Moon, “Susannah, Sorry for the delay. We have put on a placeholder and are awaiting a draft on a bill. I will make sure it mirrors Delegate Bell’s bill. I am not sure if it will be submitted or we will sign on to his. It is still early in the stage, but wanted to keep you in the loop. Senator Vogel will call you with any questions. Thank you for your patience and I am praying your situation is remedied.”
Speechless. Now my senator was also drafting a bill on my behalf, someone who, again, didn’t know about Appendix K until I told her about it. I was simply stunned.
Tonya Milling was thrilled to hear this news and promised to reach out to Senator Vogel’s office to coordinate their efforts with their other potential senate patron, Senator Ebbin.
In the midst of this, Tonya gave us a great education regarding the importance of honoring legislative relationships: “We have contacted Vogel’s team to let them know another Senator was in play with us before them, they are cool with it. It can get tricky, but we want to “protect” our patrons and not cast too wide a net. We want to avoid duplicative legislation in the same house, and we want to protect the “win” for our patrons. Now, of course, there may be other reps that put something in because they heard from their constituents and that is fine, but we just don’t want to “shop” our bills when we have a patron secured. Also, whatever bill is with our patron is the one we put on our agenda and do the groundwork with… We can set another meeting of our internal group prior to session to prep, let me get more ducks in a row after [the] Ebbin meeting. Thanks!”
On December 7th, Tonya sent us the following update: “Hi All, Met with Sen. Ebbin this morning, he happily agreed to submit this Budget Amendment. We shared with him that Vogel also supports, so Ashley (The Arc’s lobbyist) has reached out to Vogel’s office to see about co-patronage. Ashley will coordinate between their two offices. Also, reached out to Bell for language, but we do not yet have language, which is not unusual since the deadline for Budget Amendments is after session starts. So, we are in good shape. Thanks!”
We were all very eager throughout December to keep advocating, but Tonya encouraged us to sit tight. She said the legislators were hard at work behind the scenes, and just because we couldn’t see anything happening publicly, didn’t mean important work wasn’t being done behind closed doors.
I did finally hear back from Delegate Gooditis’ office on December 22nd. Mariah confirmed what Tonya Milling had already told us, that this would be a budget amendment, rather than a bill. But then Mariah asked if I might be free the following week for a brief phone call from Delegate Gooditis who would like to speak to me about my advocacy work. I told her I’d be honored.
On December 30th, Tonya reached out to encourage all of us to sign up to speak at the House and Senate Finance and Appropriations Committee Public Budget Hearings which would be held on January 5th. She said, “Since this effort is a budget amendment I think this is an important place for you all to testify… We are planning to have strong speakers at each hearing, then have our membership email and call the day of hearings to create a flood of outreach. Session starts officially the 12th… Ashley will keep us all posted on opportunities as we go. Let me know questions thanks and Happy New Year!”
Unlike the Virginia Disability Commission, speaking at the Public Budget Hearings was much less personal. There were over sixty people signed up to testify at the Northern Virginia hearings and I had to sit on Zoom for several hours listening to others testify on various topics before it was finally my turn. I knew in advance that no feedback would be offered, but I was glad to know that both Senator Vogel and Senator Ebbin would be in attendance at my particular hearing that day. The various members of our little advocacy team were in constant communication with each other, even though we were all speaking in different regions. “Kate and I have gone! You got this, Susannah!” Catherine e-mailed me about halfway through the session.
I had now testified before three legislative panels in the course of two months, and I realized as I concluded my testimony at the Budget Hearings, that all of the pent of fear and anxiety I had experienced the previous September when I had embarked on this advocacy journey had evaporated. I, quite simply, wasn’t afraid anymore. I realized there was a power in using my voice that I’d never tapped into before. Just the sheer act of speaking up and advocating for a cause that was important to me had power in it- regardless of the outcome.
This was brought home more fully the next day when I had the opportunity to speak one on one with Delegate Wendy Gooditis. First, she thanked me for my “relentless” advocacy work, and then she asked me all about my family. We spoke a bit about her family, and then she shared how important it was that I keep advocating for this budget amendment because, despite all our hard work, there was still no guarantee it would pass. It was lovely to talk to her. I felt honored that she’d taken the time to call.
But the most important part of that conversation for me was that when we got off the phone, I knew I was her equal. We were just playing different roles in life. She had power and authority that I did not have, however, she worked for me! I had the power of influence amongst her constituents and could help or hurt her ability to get re-elected. The Partners in Policymaking program taught me that my voice mattered, too.
On January 12th, Delegate Bell’s office finally distributed the exact language for the budget amendment. It was very meaningful to me that they asked for our feedback, and when there were several points that the four of us moms didn’t like about the language, we proposed edits, and they actually listened! They didn’t give us every edit we asked for, but they changed the few things we had major issues with, and the amendment they ultimately submitted was much more aligned with what each of us was comfortable with.
On January 20th, the final version of the budget amendment, sponsored by Delegates Bell and Gooditis in the Virginia House of Delegates, and by Senators Vogel and Ebbin in the Virginia State Senate, was made public. The amendment read as follows:
“Pending CMS approval, the Department of Medical Assistance Services (DMAS) shall allow legally responsible individuals (parents of children under age 18 and spouses) to provide personal care/personal assistance services and to be paid for those services when circumstances prevent an individual from being cared for by a non-parent caregiver. Any legally responsible individual who is a paid aide or attendant for personal care/personal assistance services shall meet all the same requirements as other aides or attendants. DMAS shall promulgate emergency regulations for the continuation of parents/spouses as personal care/personal assistance providers.”
We were thrilled and watched eagerly as the various patrons presented the budget amendments during the General Assembly Sessions. But the question still remained, would the amendment get enough votes?
On January 25th, I had the opportunity to sit down with Khalilah Jones, a fellow PIP Advocate, and the Outreach and Public Relations Coordinator for Moms in Motion, and talk about my experience as a caregiver for my daughter with disabilities. Additionally, she gave me the opportunity to talk about my advocacy work surrounding Appendix K, and to ask for continued support from elected officials throughout Virginia. The interview, which she posted online, ended up getting several hundred views and was used as an advocacy tool amongst my fellow PIP advocates to further convince those in power to support this amendment. But the most important part of that experience for me personally was that, besides a few notes I’d jotted down in advance, I was able to speak entirely off the top of my head. My thoughts were clear, I was confident in my perspective, and I didn’t feel nervous at all.
As the weeks passed, we knew we were getting close to the end. Tonya Milling sent the following message to our team on February 8th: “Hey all, this week is final week to have real influence over what ends up in the budget… where parents as providers needs to be. This weekend the budget committee for House and Senate will meet, and they will continue meeting all next week to finalize their budget. The budget will come out Sunday 2/20… Now through Friday the 11th, I suggest emailing the full money committees, if you have limited time, prioritize the HHR members… I will send them The Arc budget list again Friday. Reminder you can attach our agenda if you would like and please refer to items 304, 41s, 23h, 58h.”
So, I spent the entire afternoon emailing a long list of Delegates and Senators.
Dear Senator McClellan…
Dear Delegate Brewer…
Dear Senator Hanger…
Dear Senator Barker…
Dear Delegate Rasoul…
“I am the mother of a child with severe disabilities here in the Commonwealth of Virginia. The Appendix K flexibilities allowed under the Public Health Emergency have drastically benefitted my family as they finally allowed parents to be paid caregivers for their minor children with disabilities. Due to the hard work of Delegates Bell and Gooditis, as well as Senators Vogel and Ebbin, we now have the chance to make permanent these measures which allow parents, many of whom cannot work elsewhere due to the burden of their child’s needs, to continue to be paid caregivers for their children on a permanent basis. You have the ability to make a difference with your vote and influence in the General Assembly. Please support Items 304, 41s, 23h, and 58h. I cannot emphasize enough how this would benefit my family and help to alleviate the financial burden we currently carry. Thank you, Susannah Taylor”
And with that… we waited.
Day by day… each one getting us closer to the 20th. And as that Sunday afternoon came to a close and I flipped open my laptop to browse through my e-mail, what I found was one simple line from Tonya Milling:
“Hello all. The approval of Parents as Providers is in both the House and Senate Budgets, making final approval very likely. Great work, congratulations to everyone.”
And that was it.
I sat at my computer and I cried.
We did it.
We actually did it.
I couldn’t believe what we’d accomplished. All because four moms of children with disabilities, who felt like they were at the end of their rope, carrying the weight of the world on their shoulders, decided to use their voices to speak up and ask their elected officials for help.
When I thought back over how afraid I had been the previous September- so much so that I actually hoped my elected officials wouldn’t respond to me… When I thought back over the statement I’d prepared to read to Mariah Bowman because I’d been too nervous to attempt talking off the top of my head… When I thought back over all the parents who had been asking DMAS to allow them to be paid caregivers for years, even decades, with no response… And when I thought back over how improbable a miracle had been… I had only one thought come to my mind.
What if we hadn’t tried?
With little hope of success, against all odds, with no indication there was any chance we could accomplish what we were attempting, we had still tried.
And in the end that’s all that mattered.
We still have to wait for the House and Senate to reconcile their budget amendments and for Governor Youngkin to sign the bottom line, but for all intents and purposes, we can now say that, with a lot of help, we successfully got a piece of legislation passed through the Virginia General Assembly before we had even graduated from our advocacy training program.
To all those who helped us along the way: Delegates Robert Bell and Wendy Gooditis, Senators Jill Vogel and Adam Ebbin, Mariah Bowman and Jenna Moon, Tonya Milling, Lucy Cantrell, Ashley Wright, and everyone else at The Arc of Virginia, Delegate Kaye Kory and all the members of the Virginia Disability Commission, and to all the PIP Advocates, especially Meghan Ashburn, Catherine Rey, Kate Oppe, and Khalilah Jones, as well as our non-PIP Advocate James Shea, and of course Teri Morgan, Dr. Penni Sweetenburg-Lee, and all others at the Virginia Board for People with Disabilities and the Partners in Policymaking Program: Thank you. This could not have been accomplished without all of your help. We are truly grateful.
But most of all, to all the parents who offer relentless care to their children with disabilities, who never get enough sleep or time off, who constantly worry about money and services, who often feel isolated and alone, and who fight and advocate for their children day after day with no end in sight, but who, if given the choice, would choose this child and this life all over again, we hope this change in the Medicaid system helps to alleviate the financial burdens that you carry, at least in some small way, for many years to come.
I know it will for me.