On March 29, I testified at our State Capitol in support of SB 218 which would remove the Medicaid clawback (payback) provision at the death of the CalABLE account holder.
Just as I was starting to speak, our daughter started jabbering in the back of the conference room, allowing me to introduce her to the committee members. Thank you, Amelia.
After testimony, there were a few questions from the committee. The most humorous was, “Can one of you get the emails to stop?” So, I thank you, #MommyTsunami for flooding the committee members’ email boxes with notes. You can officially stop now. I’ll let you know when we’ll need the next wave.
Here is what I shared with the State Senate Finance Committee:
My name is Kelly Kulzer-Reyes, and I am a parent, a California Community College professor, a National Down Syndrome Society –DS Ambassador, a leader of the Kern Down Syndrome Network, and co-chair of the California Down Syndrome Advocacy Coalition.
Thank you for allowing me to speak today in support of SB 218 The Qualified ABLE Program: Tax-Advantaged Savings Accounts. And, most importantly, thank you, Senator Dodd, for sponsoring this important bill. It means the world to families like ours.
I advocated for federal passage of the ABLE Act and have met with House Majority Leader McCarthy multiple times both in our district and on Capitol Hill about ABLE and other disability-related legislation. Today I am here to testify on behalf of the approximately 50 families at Kern Down Syndrome Network and the nearly one thousand families supported by members of the California Down Syndrome Advocacy Coalition, and there is much concern around the Medicaid Clawback currently in place with the CalABLE program.
Because ABLE accounts are transactional, all purchases will be subject to tax. Each transaction, each day, will support our state and federal tax systems. All money deposited will be post-tax funds.
Many people with disabilities have spouses, children, or other dependents. For CalABLE account holders to leave a legacy to their loved ones, like you and I can currently do, the Medicaid Recovery must be removed from the CalABLE program. It is an issue of equity.
If Amelia has a husband, she should be able to leave him her hard-earned money.
If she has a child, she should be able to leave her child her money.
If she wants to donate these post-tax funds to her most-loved charitable organization, she should be able to do so. Why? Because the money is hers. She has already paid taxes on it, just like you and I have.
When Amelia was born, and we first spoke with a social worker, the first words I remember hearing were,
“Do not save a penny in her name. Do not allow her to be named in a will. She will not be able to have assets in her own name. You will set her up for catastrophe.”
Take a moment to imagine that. We were new to Down syndrome, and now we were being told to keep our daughter in poverty. On purpose. Our government systems were not set up for her to earn and save. My own grandmother innocently told me not to worry, “The government will take care of her”, she said.
Instead of giving me security and calm, this drove me to advocacy. I don’t think any of us sitting here in 2017 believe “letting the government take care of her” is ideal advice. Thankfully, much has changed with ABLE, but there is still work to be done.
I understand we are living in uncertain budget times. Many of us are concerned about future of MediCal funding, but for Amelia to ensure her own self-sufficiency, she should be able to save and spend as you and I do. That is the true spirit of our nation and the spirit of the ABLE Act.
Like other states, the success of California’s ABLE program will rely on a high level of enrollment. SB 218 would allay these concerns and encourage program enrollment and increase contributions.
Thank you so much for the opportunity to speak with you this morning. We look forward to your support for SB 218.
Link to SB 218