Take a minute to read her thoughts on the event, the asks, and why we may elect Theo for Prez in 2020.
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
Here’s the information to send a letter of support for SB 218
California Achieving a Better Life Experience (ABLE) Act Board for People with Disabilities
Request for Letters of Support for SB 218
Good morning everyone,
Senator Bill Dodd has introduced Senate Bill 218, which will prohibit Medi-Cal recovery of CalABLE accounts. The text of this bill can be found here: http://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=201720180SB218). A Bill Fact Sheet is also attached for your reference.
We are requesting letters of support for SB 218 to members of the Senate Governance and Finance Committee. It is important that committee members hear from supporters before a scheduled hearing on March 29.
A sample support letter is attached to this email; letters may be mailed or emailed. If emailing your letter, please address your email to the following individuals:
Leslie Spahnn, Legislative Director – firstname.lastname@example.org
Senate Governance and Finance Committee members:
Please help share this request with your constituents and other prospective CalABLE participants. Thank you for your support!
If you have any questions, please contact us at email@example.com.
SAMPLE LETTER OF SUPPORT
Senator Bill Dodd
California State Senate
State Capitol, Room 5063
Sacramento, CA 95814
Re: SB 218 (Dodd) – The Qualified ABLE Program: Tax-Advantaged Savings Accounts
Dear Senator Dodd:
[Name of Your Organization is/I am] writing in support of SB 218, a measure that will prohibit the state from filing a claim against a beneficiary’s CalABLE account for the payment of medical assistance paid under Medi-Cal. The excitement for new possibilities for people with disabilities that has come with the rollout of ABLE plans across the country has unfortunately been tempered by the Medicaid payback provision that currently exists in the federal ABLE legislation and Section 1396p of Title 42 of the United States Code. Limiting Medi-Cal recovery of CalABLE accounts would alleviate significant concerns held by individuals eager to participate in the CalABLE Program.
[Optional: Include specific information about why you/your organization is interested in/impacted by this issue.]
ABLE accounts stand to be a game-changer in helping provide financial security for people with disabilities, with the potential to break the cycle of poverty that often results from the inability to save money as a result of receiving public benefits. Unfortunately, account enrollment across the country has been slow due to fears around Medicaid recovery. 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, as well as increase contribution levels.
Thank you for your commitment to empowering people with disabilities to finally save for the future they deserve. [Name of Your Organization is/I am] a proud supporter of SB 218.
Your Name and Title
cc: Leslie S. Spahnn, Legislative Director
Senate Governance and Finance Committee
We are working hard at CDAC to ensure the gains made in recent years are not eroded. This piece of legislation (and hopefully another one related to a tax deduction for deposits– fingers crossed) will help make California’s ABLE program even better! Please know none of this would exist without collaborative efforts between friends at CalABLE and the National Down Syndrome Society. CDAC warms extends gratitude to both entities.
|Senate Bill||No. 218|
|Introduced by Senator Dodd|
|February 01, 2017|
LEGISLATIVE COUNSEL’S DIGEST
Vote: MAJORITY Appropriation: NO Fiscal Committee: YES Local Program: NO
The people of the State of California do enact as follows:
Section 4885 is added to the Welfare and Institutions Code, to read:
(a) Notwithstanding any other state law, all amounts in the designated beneficiary’s ABLE account, upon the death of the designated beneficiary, may be transferred to an ABLE account for another eligible individual specified by either the designated beneficiary or the estate of the designated beneficiary.
These letters were sent to California Senators on the two most concerning cabinet nominations for the Down Syndrome community.
The Honorable Dianne Feinstein The Honorable Kamala Harris
United States Senate United States Senate
Washington DC 20510 Washington DC 20510
January 2, 2017
Dear Senators Feinstein and Harris,
The California Down Syndrome Advocacy Coalition (CDAC) would like to share with you our concerns about President-elect Trump’s proposed Secretary of Education, Betsy DeVos. CDAC is a partnership of parents and active Down syndrome organizations across the state of California who advocate on behalf of people with Down syndrome and their families.
One of our main goals is to promote meaningful access to educational opportunities for people with Down syndrome. Thanks to the hard work of many passionate advocates—parents, educators, legislators, and other stakeholders—federal law now protects vulnerable students such as those with Down syndrome by ensuring that they have the right to a free and appropriate public education (FAPE) in the least restrictive environment (LRE), which is presumed to be a general education setting with appropriate supports. The reality is that parents of students with Down syndrome often have to fight long and hard to secure their child’s rightful place in an inclusive education setting, but the law is on their side. At least, it is if the family is looking at public school.
Therein lies our greatest concern with President-elect Trump’s selection of Betsy DeVos as the potential Secretary of Education. Ms. DeVos is well known for supporting a voucher-based, privatized, for-profit education system. For vulnerable student populations, such as those we at CDAC support, this could be catastrophic. Private and for-profit schools have the right to set academic admissions criteria that many students with disabilities cannot meet, and these schools are not required to provide all the accommodations that students with disabilities may require to be successful. So where would this leave our children with Down syndrome? Very likely right back where we started decades ago, being educated in a setting that does not provide them with the best opportunity to earn an education that prepares them for their adult life.
Some have speculated that if voucher-based education is adopted, public schools would remain open (but woefully underfunded, thanks to funds being diverted to vouchers) solely for students with disabilities and those with very low incomes. Others have speculated that students with disabilities would end up in a small number of segregated private schools that accept them.
Neither solution is a positive one in any way for these students. In fact, they are both taking several giant steps backward, erasing all the progress we’ve made over this last few decades.
These potential changes would impact a significant population of our state’s students: Of the roughly 5.7 million students enrolled in California’s public schools, 10.5 percent of them have a disability and fall under the umbrella of students protected by the Individuals with Disabilities Education Act (IDEA). That’s more than 600,000 California students who could be negatively impacted by a voucher-based educational system.
We understand that there are student with disabilities whose learning needs are not met in the students’ home schools and that education options are important; however, under no circumstances should a private school voucher impact the funding of public schools. All students in the United States have the constitutional right to equal public education opportunities.
Additionally, IDEA ensures a free and appropriate public education, and the purpose of the Every Student Succeeds Act (ESSA) is to provide all children significant opportunity to receive a fair, equitable, and high-quality education and to close achievement gaps that currently exist.
Our nation’s education secretary should ensure all students have access to a high-quality public education. And while some students with disabilities have had successful experiences in private and charter schools, both the Council of Parent Attorneys and Advocates and the United States Government Accountability Office have done studies that expose reason for concern regarding a national public policy based on vouchers and charters. (I would be happy to provide you with links to those reports if you’re interested in the specifics—the reports are quite comprehensive.)
And so, we respectfully request that you do not support Ms. DeVos as our future Secretary of Education. Or at the very least, we request that you strongly question how Ms. DeVos on how she would work to protect the rights of students with disabilities in a voucher-based system that could, in theory, include private schools, charter schools, and public schools. Would all of those voucher-based schools be required to uphold FAPE and LRE for all students? Would they be required to uphold the new Every Student Succeeds Act (ESSA) standards that are currently being refined and should be implemented by next year? Would all of those schools receive proper training on the benefits of inclusion and be staffed with educators who are qualified to teach diverse student populations?
It is our belief that a voucher-based system is not a positive change for students with
disabilities—but if it does come to pass, we strongly suggest that the Secretary of Education be prepared to handle all of the issues that will come up pertaining to students with disabilities. We need to ensure that we continue to move forward for our vulnerable student populations, not take a step backward by completely dismantling our public education system.
We ask that you support a candidate who is interested in expanding access to educational
opportunities for all our student populations, not simply those that fit in the “typically
developing” box. We ask that you support a candidate who is committed to implementing ESSA while ensuring that ESSA includes safety measures that will protect vulnerable student populations, such as those with disabilities. We ask that you support a candidate who is committed to continuing to improve our public education system, which is not without flaws but which is, in general, a positive system that can ultimately support all student populations.
With respect and thanks,
Kelly Kulzer-Reyes and Cathleen Small, co-chairs of the California Down Syndrome Advocacy Coalition
The Honorable Dianne Feinstein The Honorable Kamala Harris
United States Senate United States Senate
Washington DC 20510 Washington DC 20510
January 2, 2017
Dear Senators Feinstein and Harris,
The California Down Syndrome Advocacy Coalition (CDAC) would like to share with you
our concerns about President-elect Trump’s proposed Attorney General, Senator Jeff
Sessions. CDAC is a partnership of parents and active Down syndrome organizations across the state of California who advocate on behalf of people with Down syndrome and their families.
One of our main goals is to promote meaningful access to educational opportunities for
people with Down syndrome. Thanks to the hard work of many passionate advocates—
parents, educators, legislators, and other stakeholders—the Individuals with Disabilities
Education Act (IDEA) protects vulnerable students such as those with Down syndrome by
ensuring that they have the right to a free and appropriate public education in the least
restrictive environment, which is presumed to be a general education setting with
appropriate supports. Based on remarks Sessions made on the Senate floor in 2000, we are
concerned that as Attorney General, Senator Sessions might not support IDEA in the way
that Congress intended it.
In his May 18, 2000, speech, Sessions indicated support for children who “have a hearing
loss, or a sight loss, or if they have difficulty moving around, in a wheelchair, or whatever”
being accommodated in a mainstream classroom. However, he went on to share numerous
examples of students with emotional or behavioral challenges, who he claimed could not be disciplined because they were “special ed.” Sessions expressed at that time his feeling that IDEA made the jobs of teachers and administrators difficult by providing loopholes by
which students with IEPs could not be disciplined in the same way as students without
IEPs—in fact, he called it the “single most irritating problem for teachers throughout
While we certainly understand the need for teachers and administrators to be able to
maintain an effective teaching environment, we are concerned that Sessions may be
painting with a very broad brush and unnecessarily discounting an incredibly important
piece of disability law. A great many students with IEPs do not have significant emotional
or behavioral challenges—no more so than any typically developing child. And for all
students with disabilities, it is clearly stated in the most recent text of IDEA that Congress
found “almost 30 years of research and experience has demonstrated that the education of
children with disabilities can be made more effective by…having high expectations for such children and ensuring their access to the general education curriculum in the regular
classroom, to the maximum extent possible…[and] providing…aides and supports in the
regular classroom, to such children, whenever appropriate…[and] providing incentives
for…positive behavioral interventions and supports…to address the learning and
behavioral needs of such children.”
Further, the text of IDEA goes on to say that if a child’s behavior is determined not to be a
manifestation of that child’s disability, “the relevant disciplinary procedures applicable to
children without disabilities may be applied to the child in the same manner and for the
same duration in which the procedures would be applied to children without disabilities.”
In cases in which the behavior is found to be a manifestation of the disability, IDEA
discusses how the student’s educational team can best address the concerns and what
steps may be taken to remedy the problem.
In short, Sessions’ argument appears to have taken a relatively small subset of students—
those with disabilities who also happen to have significant behavior challenges—and used
that population segment to argue against a law that actually does account for such
circumstances and, perhaps even more importantly, protects the rights of approximately
6.5 million students in America’s public schools—about 13 percent of all public school
students, according to the National Center for Education Statistics.
Sessions’ remarks were made more than a decade ago, and we certainly recognize that his
views on education may have evolved over the years. But we humbly ask that you please
consider his historical views on students with disabilities when deciding whether to
confirm his appointment as Attorney General. Please ask Senator Sessions about his
current views on IDEA and other disability-related legislation. Ask him if he’s aware of the
vast body of research indicating the success of IDEA since its inception in 1975. Ask him
how he plans to use his position as Attorney General to uphold the rights of vulnerable
student populations served under our nation’s federal disability laws.
We have made so much progress in disability law over the past decades, and none of us
wants to see students’ disability rights lessened or stripped away under an Attorney
General for whom they are not a priority.
With respect and thanks,
Kelly Kulzer-Reyes and Cathleen Small, co-chairs of the California Down Syndrome
Your very own California Down Syndrome Advocacy Coalition (CDAC) has been awarded the NDSS State Advocacy Network of the Year award by the National Down Syndrome Society. While on Capitol Hill, members of our organization will be advocating with and for people with Down syndrome at the Buddy Walk on Washington in April 2017.CDAC’s award will be presented at a ceremony while we are there.
Kelly Kulzer-Reyes and her daughter filmed this promo for the BWW 2017 Conference. (Sorry about the captioning. It needs to be fixed.)
In 2016, we have been building relationships in California with the help of NDSS and the fabulous Ricki Sabia of the National Down Syndrome Congress. Their support has been invaluable. Here are some important issues we are looking at in these changing political times:
Ensuring Minimum Wage or Better
NDSS California Forums and Connections in February 2017
And so much more
If your organization would like to have a representative active on CDAC, please contact us at firstname.lastname@example.org. Let us know which organization you are affiliated with (if any). If you would like to help with advocacy, but can’t commit to monthly meetings with assignments, consider joining our Facebook Workgroup. Send a note with your request to join stating why you are interested and which part of California you call home.
Dear Ms. Kessel,
Thank you for your prompt response to our letter regarding ESSA implementation. If we may ask, why will the State Board of Education not consider adding any parent stakeholders to the California Practitioners Advisory Group at this time? I understand that the current committee members were appointed in March 2016, but is there any reason why more members couldn’t be added, particularly since the committee currently does not include any parents from the special needs community, who are undoubtedly a vital part of this conversation, given the scope of the disability community in California?
We have indeed encouraged our members and partners to join the CDE ESSA Update listserv, and I appreciate you letting us know that CPAG meetings are open to the public. We will encourage our members to make every effort to attend and to submit comments. However, we still think that the CPAG and the disability community in California would be better served if someone representing the disability community was an active part of the CPAG.
In regards to specific requests for website improvements and email addresses for outreach and the listserv, we will solicit feedback for these, and share them with you after our next meeting.
From: ESSA <ESSA@cde.ca.gov>
Sent: Monday, July 11, 2016 10:07:12 AM
To: Cathleen Small
Subject: RE: California ESSA implementation and the ESSA/CPAG planning committee
Dear Ms. Small and Ms. Kulzer-Reyes,
Thank you for contacting the California Department of Education (CDE) and for your interest in the Every Student Succeeds Act (ESSA). We value your feedback and wanted to take the time to respond to your requests.
Regarding adding members to the California Practitioners Advisory Group (CPAG), unfortunately we are unable to add members to the group at this time. Current CPAG members were appointed in March 2016 for two and three year terms. The State Board of Education, who appoints members to the CPAG, will not request applications for new members until these terms are completed. However, CPAG meetings are open to the public and public comment and participation from advocacy organizations is highly encouraged.
The best way for interested members of the public to stay informed about the development of California’s ESSA State Plan and transition activities is to join the CDE ESSA Update Listserv. Please encourage members of the Family Empowerment Centers and Parent Training and Information Centers to join the listserv by sending a blank e-mail message to email@example.com. If you can provide me with a list of e-mail addresses, I would be happy to add these contacts to the list manually.
Regarding transparency, while we strive to go above and beyond the statutory requirements around public notices and communication, we can always improve. We are working on making our CPAG and ESSA Web pages more user-friendly and we would be open to any specific suggestions you and your colleagues may have about how to do this.
I look forward to a continued dialog with you about how we can support your engagement in California’s transition to the ESSA. If you have any questions, please let us know.
Joy Kessel, Education Programs Consultant
Every Student Succeeds Act Office
California Department of Education
1430 N Street, Suite 6308
Sacramento, CA 95814-5901