COVID-19 Vaccine Rollout and the Disability Community in Arizona

COVID-19 Vaccine Rollout and the Disability Community in Arizona

On March 5th representatives of multiple disability organizations came together to talk about the need for Arizona to do more for the disability community in Arizona with the COVID-19 vaccine. Organization at this press conference have been fighting to prioritize vaccines for the disability population since December and letter after letter never received a response from the governors’ office.

I was honored to be in this group and to talk about the need to vaccinate parents in our community- especially those who have children with autism, Down syndrome, or children who are medically fragile. We have watched our children’s respite providers, therapists, and teachers get the vaccine and waited our turn, but it never came. This means that for parents who have medically fragile children, their parents just became the most dangerous people in their lives. It’s absolutely unacceptable.

Here are a few links to the news coverage we were able to get from this press conference.  

https://kjzz.org/content/1664307/arizona-parents-kids-disabilities-plead-covid-19-vaccine

https://www.azfamily.com/news/continuing_coverage/coronavirus_coverage/parents-of-kids-with-special-needs-pushing-for-vaccine-priority-in-arizona/article_aec3e9d0-7fbb-11eb-a434-f3af72a331ed.html

https://www.fox10phoenix.com/news/disabilities-rights-groups-pan-arizona-vaccination-plans1

https://www.12news.com/article/news/health/coronavirus/vaccine/advocates-call-on-state-to-prioritize-the-disabled-in-vaccine-rollout/75-688b71cd-98a0-4431-b92a-9cb9f770b2bc

There is a meeting scheduled between the disability community and the governors’ office on Wednesday.

 

We are hoping that during this meeting these three items will be addressed.

  1. That all ALTCS members 17 and older will be eligible for the vaccine right away
  2. That parents of children with intellectual or developmental disabilities also be eligible for the vaccine right away
  3. That Arizona follows the FEMA checklist for the COVID vaccine roll out and ensure that registration for the vaccine and that vaccination sites are in ADA compliance.

If you would like to call Governor Ducey’s office (602) 542-4331 in support of these actions please do so today- March 9th.

 Thank you.

Lessons Learned and a New Project for 2021

Lessons Learned and a New Project for 2021

The beginning of the legislative session came with a rush of excitement. One year after attending the Pilot Parent Program of Southern Arizona’s Partners in Leadership program I was ready. I gathered data, contacted my local Senator, found allies within the community (13 organization) who supported the legislation and then- curtains.

This year is a different year. This year two years-worth of bill are being pushed through at the same time. This year we are in the middle of a pandemic. This year I saw many bills in the committee my bill was placed in that delt with regulating marijuana- which was just made recreationally legal in Arizona. So, with all of that it is easy to understand why this bill didn’t make the cut this year.

Other issues came to my attention while I was working on two bills for a while- the autism screening bill and the Down syndrome bill (which the Down Syndrome Network took over). One was that as I was coalition building for both bills, I noticed that I would only pitch the autism bills to autism organization and the Down syndrome bill to Down syndrome organizations. Why? I think I was nervous that unless the bill had a direct relationship to that organization and its members that they wouldn’t be supportive of it. Was I wrong about this? I don’t know but it is something I would like to explore going forward. The strange thing about the disability community is that we are often fractured. We silo our services to a certain group within the community to the exclusion of others. This fact is why D.A.M.E.S. (Differently Abled Mothers Empowerment Society) is actually open to families regardless of disabilities, because we all need help and support.

Imagine bringing together all of the disability organizations in Arizona with the sole focus of helping to pass bills that impact the disability community- full stop. A group that is focus not just on the bill of today, or tomorrow but focused on building relationships with legislators, registering more families in the Right to Speak system, and then working on 2-3 bill each session as a large coalition. What kind of impact would that have? How many lives could we change by working together? What could we achieve by leaving our egos at the door and really working and focus on the outcome- not the credit?

Maybe I’m being a little Pollyanna about this, but I think it’s worth a shot?

Another project for 2021.

Bills, Bills, Bills

Bills, Bills, Bills

The legislative session has begun, and we are now in a sprint to the finish line.

For a year I have been working with Senator Bowie from Legislative District 18 on two bills that will benefit the disability community in Arizona.

SB1633- (https://www.azleg.gov/legtext/55leg/1R/bills/SB1633P.htm) will require that all AzEIP members be screened for autism at 16 months and 30 months of age. Currently, AzEIP practitioners state “it is not in our scope of work to suggest to a parent they seek a medical diagnosis from a developmental pediatrician.” This would change all of that.

Why is this necessary? We know that early diagnosis is the key to successful outcomes for children with autism. Autism diagnosis at early ages (as early as 12 months of age) have found to be reliable and the CDC even recommends autism screenings at 18 months and 24 months of age.

What does this mean practically for parents and for children? Currently if you child is found to have a developmental delay and qualifies for AzEIP the parent can choose which delay they want to focus on and are then given 1 hour of therapy a week to work on it. When a child has a diagnosis of autism they are usually suggested to start intensive therapy (40 hours a week). So, the difference is between a child getting 52 hours of therapy in a year or 2,080! It’s not difficult to guess which will have a greater impact on that child’s outcome.

SB1634- (https://www.azleg.gov/legtext/55leg/1R/bills/SB1634P.htm) will add Down syndrome as a qualifying diagnosis for DDD. Those with Down syndrome currently qualify under cognitive/intellectual but Down syndrome also affects physical life as well, something that is not taken into consideration when parents are forced to qualify under cognitive/intellectual. This barrier puts an undue burden on parents, when a simple genetic report should be sufficient enough to qualify their children for DDD services.

If you would like to help us pass these bills and make them laws you can:

1. Find your legislator (https://www.azleg.gov/findmylegislator/)

2. CALL them

3. Tell them why the bills are important

4. Spread the word! This next two months I will be posting often on Facebook and Instagram. Please share the posts in as many groups as possible.

This is my first-time working bills through the legislature. It is such an honor to be working on behalf of my community and to hopefully make changes that will make your lives, and those that come after us, better.

What’s Your 2020 Story?

What’s Your 2020 Story?

This year we have all experienced an extraordinary event together- a global pandemic.

This year was unlike any other year we have ever experienced and most likely something that we will never experience again.

We have isolated, we have home schooled, we have tried to do teletherapy, we may have lost jobs, and we may have lost loved ones.

This year’s story- like every year, every month, every day- is a story we get to write.

You get to decide what your 2020 story is.

Were you tested?

Did you overcome it?

Were you quarantined?

Did you get a chance to spend more time as a family?

Were you unable to see your loved ones?

Did you realize just how much they mean to you?

Were you responsible for your child’s learning?

Did you grow to appreciate the amazing teachers in your life?

Going into 2020 did you think that as a mother you were giving all that you had to give, that every day you were spending all the energy you could muster, and then you were asked to do more… and did you?

This year my story is one of resiliency and growth. Of learning to handle more than I ever thought possible. Of working at home while having two children at home doing therapy in the next room. Of trying to help my son with online teaching, while greatly appreciating the amount of work, energy, and effort that his teacher puts into his learning. Of marveling at my son’s ability to learn and grow despite the curve balls thrown at him this year. Of delighting in seeing the growth and development of my daughter, she desperately misses her friends, but she has grown so much this year at home.  Of appreciating my husband and all the work he does for our family and the amazing amount of time we got to spend with each other this year. Of building deep relationships with co-workers and disability advocates.

This year has been trying, but you can write your story.

You can shape the narrative of your life.  

So what is your 2020 story?

The Continuation of Self

The Continuation of Self

When my son was diagnosed with autism, I knew that working in a lab as a geneticist or as a professor wouldn’t be in the cards for a while, but I was getting anxious, depressed, quiet.

 I had just received my Master of Science degree from Arizona State University and now that diploma sat on the floor of my bedroom, in a frame, with nowhere to put it.

 I began to buy and read as many STEM picture books as I could get my hands on, and then it occurred to me- I have something to offer in this space.

 In my youth I love to write poetry and I decided I would write a STEM picture book series in verse- I mean how hard could that be…

 Well…

Let me tell you…

It… is… HARD!

 Not only are you keeping track of the rhyme and meter, but you are also trying to make sure that you don’t have forced rhymes, or near rhymes. You need to make sure that the scientific concepts are correct and relayed in a way that is fun and engaging to your audience. You have to make sure that your story has an arc, that it fits on 26-page spreads, and that everything word has a purpose.

 Then you have to find a publisher who will take your work and put it out into the world.

 Years were spent querying publishers and agents. I had interest from a few, but no takers. For many I was writing in a very difficult space- a narrative non-fiction STEM picture book… in rhyme. This meant that it would be hard to translate into multiple languages, it didn’t exactly fit in the non-fiction space, and it didn’t really fit as a traditional picture book.

 After three years of taking classes, perfecting my story arc, and perfecting my rhyme and meter, I ultimately decided to self-publish my Ava series… now the REALLY, REALLY hard part – finding an illustrator to bring my words to life.

One day I was on Facebook cruising and autism mom site and there they were. PECS pictures a mom made in the image of her child.

 I wrote to her immediately- have you ever illustrated picture books?

 Nothing… for a month.

 Then she wrote back, we met, we agreed to work together.

 Karlie’s artwork is absolutely amazing. Her illustrations have brought life to my text. This is her first time she has illustrated a picture book and every time I received a spread from her I was blown away by the quality of her work. I will always be so thankful for her.

 In this first picture book you will get to know Ava- a half-Hispanic, half-Caucasian girl who never feels like she fits in anywhere. On Picture Day she is determined to fit in when… static electricity strikes! Ava must convince her friends to become ecstatic about static to create an epic class photo. She finds a way to fit in by bringing her friends into her world of play and exploration.

 Throughout the book the kids will learn about the scientific method, atoms, and static electricity. At the end of the book parents will find discussion questions and an experiment they can do with their child.

 My hope with this book is to spread my love of science, exploration, and importance of being uniquely you and inviting others into that space.

 My other hope is to inspire other mothers who are raising children who have disability to continue to dream, to create, and to share your gifts with the world.  

 Order your copy of Picture Day Pandemonium here.

The Power of Advocacy

The Power of Advocacy

If COVID-19 has taught us anything it is that if you are raising a child who has a disability- you need to learn how to advocate.

During this pandemic we saw some companies, schools and departments of government really step-up to help our community, but we also saw many other fall short of helping our children.

What ultimately makes the difference for our community is our ability to advocate.

 Last year I was honored to be a participant in the Pilot Parents of Southern Arizona’s 2019-2020 Arizona Partners in Leaders class. This class is free to parents who are raising a child with a disability or for people who have a disability. It teaches parents how to advocate, how to understand the legal rights for people with disabilities and how to change laws if those rights have been infringed on.

This class has fundamentally changed my life. It has given me the tools to be a better advocate, not only for my children, but for the community as a whole. In September I was able to join with other collaborators who I meet through the program to push AHCCCS to help parents get care for their children during school hours. From what I learned in the program I called for action from the community, gathered stories, wrote letters, contacted the press, and was able to sit in meetings with decision makers to press for our rights and to make sure that our concerns were being heard. These actions resulted in parents getting in home help for children during remote learning hours and helped to speed up the release date of that program.

Another member of the 2019-2020 group was my dear friend Sarah Dorman. During a get together we talked about how Universities should be allowing students to get college credits for working with a SPED student in-home during the pandemic. Though I struck out with ASU and U of A, Sarah hit a home run with NAU! NAU took this idea and ran with it. They are in the middle of a pilot program with 5 students! It is the hope of Sarah and the University that this will not only benefit the children, but also the students by giving them hands on experience with working with a child with a disability.

https://www.azcentral.com/story/news/local/arizona-education/2020/09/24/northern-arizona-university-department-economic-services-programs-help-students-disabilities/3497695001/

https://www.azfamily.com/news/arizona_schools/nau-program-helping-kids-with-special-needs-navigate-online-learning/article_3b9618e6-013c-11eb-9dfe-934beadc71ea.html

 Learning how to advocate is one of the most important things you can do as a special needs parent. The program that Sarah and I participated was a Pilot Parent Program. These programs are free to parents across the United States. The link for the program Sarah and I participated in is below. If you don’t live in Arizona please search for one in your area and sign up.

If you are interested in learning more about Pilot Parents of Souther Arizona here is there website:

http://pilotparents.org/