A Rare Collection - From Financial Strain to Supportive Gain - A Call For Action

[00:00:00] I'm Effie Parks.

[00:00:05] Welcome to Once Upon a Gene, a podcast.

[00:00:08] This is a place I created for us to connect and share the stories of our not so typical

[00:00:13] lives.

[00:00:14] Raising kids who are born with rare genetic syndromes and other types of disabilities

[00:00:18] can feel pretty isolating.

[00:00:21] What I know for sure is that when we can hear the triumphs and challenges from others who

[00:00:25] get it, we can find a lot more laughter, a lot more hope, and feel a lot less alone.

[00:00:31] I believe there are some magical healing powers that can happen for all of us through sharing

[00:00:36] our stories, and I'll take all the help I can get.

[00:00:43] Once Aponogene is proud to be part of Bloodstream Media, living in a family affected by rare

[00:00:49] and chronic illness can be isolating, and sometimes the best medicine is connecting to

[00:00:54] the voices of people who share your experience.

[00:00:57] This is why Bloodstream Media produces podcast blogs and other forms of content for patients,

[00:01:02] families and clinicians impacted by rare and chronic diseases.

[00:01:06] Visit bloodstreammedia.com to learn more.

[00:01:08] Hi there, and welcome to the show.

[00:01:10] I'm so thrilled to finally be getting back

[00:01:14] to our storytelling episodes that I call a rare collection.

[00:01:17] And I hope you're ready for the first one of the year

[00:01:20] because it's a big one.

[00:01:23] Today, we're confronting the pressing issue

[00:01:26] that affects the very fabric of our society.

[00:01:29] Unfilled promises of support by systems in our government

[00:01:34] for paid caregivers for children who have disabilities

[00:01:36] and medical complexities.

[00:01:38] And in a world where the wellbeing of our youngest

[00:01:40] should be a priority, we find ourselves at a crossroads

[00:01:44] where funds meant to support the development and care of our children are be a priority. We find ourselves at a crossroads where funds

[00:01:45] meant to support the development and care of our children

[00:01:48] are slipping through the cracks, unused and unclaimed

[00:01:52] due to the stark shortage of caregivers.

[00:01:54] I know for myself here in Washington state,

[00:01:56] Ford qualifies for all of the things.

[00:01:59] I've sent out probably 300 messages

[00:02:03] to try to get caregivers where I'm authorized to do so.

[00:02:06] Not only does it take a minimum, a minimum of six months to get someone certified, according to the state,

[00:02:14] to take care of your child, but you cannot find them.

[00:02:17] They will not take the pay that is offered, and they will not do the entire job that is needed, at least in my case, where the only times

[00:02:27] I've ever gotten responses were that no,

[00:02:30] they will not help with diapers

[00:02:32] and no, they will not lift his body.

[00:02:35] It's really frustrating.

[00:02:36] And today I'm having three women that I respect so much.

[00:02:42] I look up to so much.

[00:02:44] You've met two of them before

[00:02:45] on the show and they're each going to tell a story. The theme for this story

[00:02:50] of course is from financial strain to supportive gain a call for action. I

[00:02:54] hope this episode fires you up. Here's a story from Katie Sheade. My beginning to

[00:02:59] this journey as a caregiver was probably like most of yours, filled with trauma, disbelief, and

[00:03:06] then a complete reshaping of the life I knew. Being a parent is a lot of work,

[00:03:11] but also the most rewarding thing I've ever done. The realization that your

[00:03:16] children are only young once and every moment is fleeting makes you want to

[00:03:21] hold on and cherish each second. But I can't say I have the same feelings about being a caregiver for the rest of my

[00:03:29] and my daughter's life.

[00:03:30] Those moments don't feel fleeting when there's no end in sight except for the ending that

[00:03:36] we all fear most, the one that is too hard to even say.

[00:03:40] I am the full time unpaid caregiver for my daughter, Millie. She is three and a half years old and truly the most beautiful little girl I've ever seen.

[00:03:50] She suffered a severe stroke right before she was born, which resulted in her requiring

[00:03:55] complete care for the rest of her life.

[00:03:58] She is blind, can't sit or hold her head up.

[00:04:02] She is not able to speak or control her body's movements.

[00:04:06] She is tube fed and has over 50 seizures per day. Parents like me have to repeat that

[00:04:12] list more times than we'd like to. But how else do you describe to someone what it means

[00:04:18] to provide complete care to someone else? Parents are going to be the best caregivers for their child. No

[00:04:26] one would question that. But in Washington state, children like Millie, whose

[00:04:31] needs qualify for in-home care, can have any person be their hired caregiver

[00:04:35] except for their parent. Once the child turns 18, this restriction goes away in

[00:04:42] an effort to encourage parents to keep their child in their home and out of costly state institutions. Millie was assessed and

[00:04:50] allocated for 185 hours per month of paid in-home caregiving to alleviate

[00:04:56] the burden on us, her primary caregivers. These hours are half paid for with

[00:05:02] federal funds and half by state.

[00:05:10] After six months of looking for a caregiver to hire, we didn't receive a single applicant.

[00:05:16] I left my job in 2021 to be her full-time unpaid caregiver, and we have struggled to support our family on one income ever since. After last session, myself, along with a number of

[00:05:23] other parent advocates began meeting to discuss plans to change the laws in Washington.

[00:05:28] We began meeting every week, and we formed a Facebook group that now has over 550 advocate members, all working towards this effort.

[00:05:37] We named the group PEPWAH, Parents Empowering Parents of Washington.

[00:05:43] And I encourage you to join us there

[00:05:45] if you want to become an advocate for this cause yourself.

[00:05:49] We presented a bill and representative Jamila Taylor

[00:05:52] has been our champion fighting for us,

[00:05:55] this legislative session.

[00:05:56] House bill 2184 will allow parents of disabled children

[00:06:01] enrolled in DDA to be authorized to become paid caregivers for their child's

[00:06:06] Medicaid personal care hours if they choose. We strongly believe this policy change is budget

[00:06:12] neutral since it simply allows more caregivers to join the workforce so that children can utilize

[00:06:19] the hours they already qualify for. House Bill 2184 sailed through policy committee with a unanimous

[00:06:27] vote. But then, a $150 million fiscal note was attached that required hiring 112 new

[00:06:36] full-time employees for DDA and a budget request of $102 million for the hours that had previously gone unused.

[00:06:47] The bill is now stuck in the Appropriations Committee, with the legislature telling us

[00:06:51] that there is no money in the budget left to allow utilization of those unused hours.

[00:06:58] Basically, the state has become dependent on our child's unused in-home care funds,

[00:07:04] and now they won't let us use them.

[00:07:06] This policy change would allow our kids to use those hours, so therefore they won't allow this

[00:07:12] policy change to happen. To purposely block children from accessing the in-home care that they qualify

[00:07:20] for in order to repurpose that money for other state expenses is beyond unethical.

[00:07:26] Our PEPWA group, as well as many other supporters and stakeholders, are outraged.

[00:07:33] We will once again have to fight to access the services our kids already qualify for.

[00:07:39] It shouldn't be this way, and we are not going to let it stay this way any longer.

[00:07:45] I know that parents out there listening feel the same way I do.

[00:07:49] We have all had enough.

[00:07:51] It's time we join together and demand better for ourselves, for our families, and for our kids.

[00:07:59] Here's a story from Lindsay Schutz.

[00:08:01] My name is Lindsay Topping Schutz, and I live in Puyallup, Washington. On January 10th

[00:08:06] 2024, I had the opportunity to testify before the Washington State House Committee on Human

[00:08:12] Services, Youth and Early Learning in favor of House Bill 218. This legislation would authorize

[00:08:19] payment for parental caregivers of minor children with developmental disabilities.

[00:08:23] for parental caregivers of minor children with developmental disabilities.

[00:08:29] This was my testimony. January 10 is a significant day for my family.

[00:08:35] Seven years ago, to this day, my husband and I would leave the hospital for the first time with our son Owen. He spent 103 days in the Tacoma General NICU. On the day that we left, we wheeled

[00:08:42] him down a hallway lined with the hospital staff and our family.

[00:08:46] As the crowd clapped and cheered for us, I wiped away tears and said thank you to the people who taught us how to keep our son alive.

[00:08:53] Owen came home requiring oxygen and dependent on a feeding tube.

[00:08:58] He would have dozens of episodes a day that left him struggling to breathe.

[00:09:02] His mouth would go dustyusky blue and I would

[00:09:05] rush to blast oxygen in his face while I suctioned his mouth and nose with a

[00:09:09] specialized machine I was trained to use. At three years of age, Owen was

[00:09:15] granted a Medicaid waiver. With that came hours to pay someone other than my

[00:09:20] husband or myself to care for him. It is nearly impossible to utilize these

[00:09:24] hours. It is well impossible to utilize these hours.

[00:09:25] It is well known that there is a shortage of nurses and caregivers. To complicate things further,

[00:09:31] caregivers are not provided with the level of medical training required to care for my son,

[00:09:36] so I must always be close by. And now that Owen is getting bigger, it's harder to find people who

[00:09:43] are physically able to lift him and his equipment.

[00:09:46] The workload is consistently falling back to me.

[00:09:50] Seven years ago, when we left that hospital, Ben and I replaced the 40 plus person medical team that had cared for Owen.

[00:09:58] Now, doctors ask me, how can they help?

[00:10:02] I have become the expert.

[00:10:05] me, how can they help? I have become the expert. The state of Washington is willing to pay everyone of the people on Owen's

[00:10:08] team, except for us, his primary caregivers, the experts, for

[00:10:14] the simple reason that we are his parents. Caregiving to a child

[00:10:19] like Owen goes well beyond parenting. The financial hardship

[00:10:23] has burdened our entire extended family.

[00:10:26] Owen will always need this level of care and will always need us as caregivers.

[00:10:32] This bill has the potential to drastically change the lives of many kids like Owen and

[00:10:37] parents like me. It is time for the state of Washington to acknowledge the work of myself

[00:10:43] and so many other unpaid

[00:10:45] caregivers in the same way that everyone else with a job is acknowledged with a paycheck.

[00:10:51] Thank you.

[00:10:53] Here's a story from Emily Holloway.

[00:10:55] Hi, I'm Emily and I'm the mom to four beautiful children who I am raising in Virginia.

[00:11:02] Our daughter Chloe was diagnosed with a rare disease within

[00:11:05] her lymphatic system due to a genetic mutation in utero. While her life was

[00:11:10] seemingly normal the first eight years, we dove headfirst into the medical world

[00:11:14] when she began showing signs of this horrific disease. After the appointments,

[00:11:19] medications and symptoms piled up, working full time was not realistic. I had to leave my beloved teaching career

[00:11:26] and cut our family finances in half.

[00:11:29] Once Chloe was able to become a Medicaid member

[00:11:32] over a year after diagnosis,

[00:11:34] I was presented with the opportunity

[00:11:36] to being her paid caregiver.

[00:11:38] I was thrilled at the chance to make $11 an hour

[00:11:42] to be able to help our income some while be home with Chloe

[00:11:44] as I was advocating

[00:11:45] between three medical institutions. This opportunity was only made available during the pandemic

[00:11:51] under an order set forth by our governor entitled Appendix K. This allowed LRIs or legally responsible

[00:11:58] individuals to care for their loved ones within their home while the world was under a medical lockdown.

[00:12:04] To put into a quick summary of Chloe's needs, you can understand briefly what a day in

[00:12:08] the life of caretaking for her looks like. I'll share some of the tasks that require her to stay

[00:12:12] well. She is on bolus enteral feeds through a G-tube, 12 hours of total

[00:12:17] parenteral nutrition through a baroviac line, 12 medications administered daily via pills and

[00:12:23] through the G-tube, care for a ventral

[00:12:26] line, assisted walking, bathing, sleeping, attending three therapies weekly and administering

[00:12:32] medications through the night.

[00:12:34] This does not include tending to her mental health as she's a prepubescent girl diagnosed

[00:12:39] with a scary life-threatening illness, loving a child through chronic pain and emphasis,

[00:12:43] consistently monitoring food intake to be able to

[00:12:46] report to a dietitian and playing phone and email tag with

[00:12:49] thousands of physicians. Now that our country is beginning to

[00:12:51] lift regulations and opening to full capacity, Medicaid believes

[00:12:55] these parents who are caring for their loved ones need to head

[00:12:58] back to the workforce and hire someone to care for their child

[00:13:01] within their home. They've created these parameters with no

[00:13:05] examples for parents to complete in a short window, such as a 10-page document written only in English

[00:13:12] where an employee of record needs to prove while I, the LRI, is the best possible candidate for the

[00:13:18] child. Even with a very detailed form filled out and an extensive letter from our pout of care

[00:13:24] team, Medicaid still needs more proof that I

[00:13:27] tried to hire someone through my personal Facebook or a care

[00:13:30] dot compost with no examples of warding given. So I either

[00:13:34] have to share my personal social media or pay for an account

[00:13:38] to post on care dot com and pay the booking fee. Another

[00:13:42] regulation being put into place is the max hours a family can receive,

[00:13:46] no matter how many medically complex children they have,

[00:13:49] is 40 hours.

[00:13:50] In my opinion, this puts every one of these unique

[00:13:53] and beautiful children in one category,

[00:13:56] and their care is not one size fits all.

[00:13:59] I believe the component the federal government

[00:14:01] is missing in these new regulations

[00:14:03] is what's the best interest of the child.

[00:14:06] My daughter has significant mental health needs that can exacerbate her chronic pain.

[00:14:10] She has a lack of trust within the medical world due to our long odyssey diagnosis where

[00:14:15] she was doubted and told she was simply making up her symptoms.

[00:14:19] One component that is vital to Chloe's disease is her specialty medications.

[00:14:23] She is on oral chemotherapy due to her genetic mutations.

[00:14:29] She's extremely rare, which makes her personal,

[00:14:32] like her own personal clinical trial.

[00:14:35] Having her mother, her biggest advocate,

[00:14:37] home to monitor the efficacy of the drugs,

[00:14:39] side effects, and progress day to day is mandatory.

[00:14:43] My question for the federal government is,

[00:14:45] what if I can't find someone to do it? I will be left with no income and still doing all this to

[00:14:52] care for Chloe and document all of her progression and regression. Realistically, I would need to

[00:14:58] find someone who is willing to drive to my house without my luxury inbursement, make $21,000 a year which would put them

[00:15:06] living below the poverty line in Virginia, and provide 40 hours of intense care for my daughter

[00:15:12] with only 40 hours of sick leave for the entire year, and no respite care. I'm sorry, but my teenage

[00:15:19] daughters both work in the service industry, one of which is fast food, and she's currently making

[00:15:24] more money

[00:15:25] working a drive-through window selling chicken sandwiches than I do to keep my child alive.

[00:15:30] So here I am, begging the government, allow me to care for my own child, and ask for this small

[00:15:36] reimbursement to help pay bills like gas to get cloyed to appointments, pay for the power we need

[00:15:42] to control the pumps to feed her, or to make a payment on the minivan I had to purchase to accommodate her new wheelchair. I'm not asking

[00:15:49] for more money. I'm just asking the one most fit to care for her. We are begging our legislators

[00:15:54] to keep our children safe and home with the people who know them best, love them the most,

[00:15:59] and are the biggest advocates for their well-being.

[00:16:02] I hope you've been enjoying this podcast. If you like what you hear, please share this show with your people and please make sure

[00:16:09] to rate and review it on iTunes or wherever you get your podcasts.

[00:16:13] You can also head over to Instagram, Facebook and Twitter to connect with me and stay updated

[00:16:18] on the show.

[00:16:19] If you're interested in sharing your story or if you have anything you would like to

[00:16:23] contribute, please submit it to my website at Effyparks.com.

[00:16:28] Thank you so much for listening to the show and for supporting me along the way.

[00:16:32] I appreciate you all so much.

[00:16:33] I don't know what kind of day you're having, but if you need a little pick me up, Ford's

[00:16:37] got you. I'm so sorry.