FACT would like to introduce you to Joey Razzano, who is a policy analyst for the Oregon Health Authority and one of the main organizers of the annual Strollerthon which raises money for the International Rett Syndrome Foundation. She and her daughter Jade have been active in raising awareness of Rett Syndrome, a neurological disorder found predominantly in girls that significantly impacts them (affecting one’s ability to speak, eat, walk, and breathe).
In this interview, Joey explains how telling their family’s story has made a difference in bringing forth legislation that supports Oregon’s disability community.
Please give a brief overview about your family’s story (e.g., when you became active in the disability community; what your family’s experience has been over the years in navigating medical/school/community systems, how you got connected with other families and/or found support).
Jade was born 12 weeks earlier than expected, so we had no idea that we were going to be thrown into “Disability World,” as I call it, until she was over a year old. Up until then, we had a home health nurse who visited once we brought her home from the ICU, and she got us in touch with early intervention almost immediately. We also got on the “therapy train” and did occupational therapy, speech therapy, and physical therapy every week, so a clinical social worker helped us find some resources in the community, including Early Head Start, when she was about three years old. Early intervention used to have these monthly meetings on various topics, and I met a few other moms that wanted to meet socially for MNO [mom’s night out]. The moms who started getting together for support ended up developing the Special Education PTA of Portland [SEPTAP]! MNO doesn’t meet anymore (which I miss!), but we remain in touch and involved in other great projects in the community.
The most difficult system I have found to deal with is the educational system. Our MNO group would compare notes, support each other at IEP meetings, offer advice on various issues, and bounce ideas off each other. Depending on which school district you live in, your experience with special education is vastly different. There’s so much confusion about what rights families have! I attended a one-day Wrightslaw workshop which covered advocacy and laws around disability to learn all the right buzzwords. That gave me more tools in my toolbox when it came to advocating for my child, and I helped others use the right language too. It’s very empowering when you know the law.
What was your first experience in “telling your story” to someone?
We are fortunate to have a foundation for Rett syndrome that has published a Rett syndrome handbook with all kinds of useful information. I read about the federal Home and Community Based Service [HCBS] Waivers called the Katie Beckett Waiver, so I knew it existed. When we got denied by SSI due to income, I appealed and was denied. Before I appealed again, I went to the Oregon Advocacy Center (now called Disability Rights Oregon), told them about these HCBS waivers, and asked if they would help me appeal the SSI decision. They researched it and said that even though the waiver does exist in the federal statute, each state gets to design their own waivers, and Oregon only had waivers for intensive behavior and medically fragile kiddos.
They got me in touch with Representative Sara Gelser and Oregon Developmental Disabilities Coalition, who happened to be sponsoring a bill for to introduce a medically involved children’s waiver! Once they heard my story, they asked me to testify and speak at a few rallies both in Salem and Portland. It was a fantastic experience – a little scary – but very empowering! I brought my daughter with me so they could see her. She freaked out during the testimony, so I held her to my chest while I testified the first time. It was a pretty powerful picture for “normal” people to see and experience.
I am happy to say that the law passed; I helped write the Oregon Administrative Rules governing it, and it only took a few years on the waiting list to receive the services! Since then, we’ve also testified for a durable medical equipment bank which should be up and running soon, and, most recently, Senate Bill 777, which is the ABLE Act [Achieving Better Life Experience], another federal law that each state has to enact for it to go into effect. It will allow people with disabilities to save more than $2,000 and not lose their federal assistance in a 529, tax-deferred account. Depending on the issues, I probably only go to Salem 4-5 times a year. When I took part in Partners in Policymaking, I was there for a weekend each month over the course of six months. That was intense, but totally worth it.
How have you changed as a person over the years (pre-Rett to present time) in terms of your community involvement?
Before Rett: I have always been a volunteer and helped people, but I said yes to everything. Now that I have a different focus and priorities, I find that I have to say no to a lot of things to keep our life in balance. I only run races that benefit a good cause. I do things because they are the right thing to do. I’m not afraid to question things and speak up. I am probably more outspoken than I should be (for instance, if I see someone parked in the lines next to a handicapped parking space, I will go right up to the car and ask them to move. Before, I would have let it slide because it didn’t affect me). I don’t take no for an answer – I usually ask, “Is that a ‘no’ or a ‘not right now’?” I’ve installed special needs swings in local parks and public schools. It’s made me so aware of the inequities in our society around disability. We still have a long way to go.
Do you have any tips for someone who is thinking about getting involved in the legislative process?
Yes! What are you waiting for? Someone else to tell the story of what it’s like to live in your shoes?? It’s really as easy as that. Sign up for a mailing list like the GO Advocacy Bulletin or FACT’s Family Advocacy Newsletter. These organizations follow legislation that will affect our communities, and they often publish fact sheets and ask for stories or action, such as contacting your representative or writing to your congress person. There is power in numbers. I often go to the constituent coffees that my representatives have at our local coffee house so they get to know me and my daughter. Even if they are not working on an issue that’s relevant today, they may get asked to work on a committee tomorrow that may involve people with disabilities, and then the connection is already made.
I can also tell you that there is a program called Partners in Policymaking for self advocates or people who advocate for people with disabilities that is like a legislative process boot camp! But you don’t have to make such a big commitment. It could be as small as attending a PTA meeting. I went to a school boundary meeting for my son’s high school, but ended up asking a question about special education curriculum at this community meeting. A representative from the State PTA told me afterward that he had been to eight high school meetings in Portland, and I was the first one to bring up special education. Don’t be afraid to ask more questions!
For more about Joey’s legislative advocacy related to SB777, please see The Oregonian’s article, Savings Accounts for People with Disabilities: is Oregon Next?