The Advocacy Landscape in 2023

Can you believe it is already 2023, friends? We can’t either.

Many of us have struggled to keep our families healthy and safe over the past few years, but the California Down Syndrome Advocacy Coalition is still around, and we are still trying to positively impact the quality of life for people with Down syndrome and their circles of support.

The following areas of advocacy are priorities right now, and if you want to be involved in conversations related to any or all of these ideas, please reach out:

  • Competitive Integrated Employment
  • Inclusive College Alliance
  • Self Determination Program implementation and success
  • Housing options
  • Housing and healthcare for individuals with Ds and Alzheimer’s disease
  • Transportation supports
  • Education
  • and more

Assignments for #ArmchairAdvocates:

  1. Identify your Congressional Representative
  2. Identify your State Senator and Assemblymember
  3. Send a note to each thanking them for their work and introducing yourself to them.


Dear Representative _____________,

Congratulations on winning re-election this past fall. I look forward to working with you to meet the needs of people with intellectual and developmental disabilities in our district. You’ve met my family and other Kern Down Syndrome Network families in the past, and we are counting on you to help reduce barriers and support us as we navigate the world of disability.

I hope we can meet in the district soon! When are your mobile office hours? Who is the best staff person to connect with to share information about our concerns?

Thank you for all you and all your staff do!

(insert family photo here)


Kelly Kulzer-Reyes


What are we paying attention to in 2020: DS Task Force, Disability Voices United, Self-Determination and more

CDAC has been writing letters and doing outreach, but there haven’t been many legislative activities lately, but Kelly Kulzer-Reyes was chosen to serve on the Developmental Services Task Force and the Service Equity and Access Workgroup by the Department of Developmental Services in 2019. She is in her first-3 year term serving in this capacity.

Right now the DS Task Force is providing feedback on COVID re-engagement. If you want to learn more about the DS Task Force, please visit the DDS page.

Disability Voices United continues to have CDAC representation in Carolyn Tellalian, medical social worker and amazing mom in Fresno, as well as Kelly Kulzer-Reyes. For Disability Voices United’s current work and projects,visit their website. Their Coronavirus webinars are a treasure trove of information. Consider joining their Wednesday evening (5-6 pm) roundtables via Zoom to get added to the email list,fill out their contact form.

Self-determination local advisory committees (SDLAC) around the state are working on creating trainings for Independent Facilitators(IF), how to choose a Financial Management System (FMS), and creating a Person-Centered Plan. Each regional center has a group of volunteers working on these projects. Send an email to your service coordinator, check their webpage or reach out to the local advisory committee to learn more.



California’s Comprehensive Perinatal Screening Program Presentation

On September 28th, Cathleen and I drove over to Richmond to present to a room full of genetic counselors who direct and manage California’s Comprehensive Perinatal Screening Program through the Department of Health. We were welcomed warmly, and we thoroughly enjoyed sharing our prenatal diagnosis survey results with them. We were asked to be honest, and I believe we represented our community well.

Requests and interests from genetic counselor:

  • Continue gathering survey results;
  • Translate survey into Spanish and distribute;
  • Create a curriculum packet and present to pre-service counselors (working on it now);
  • Connect genetic counselors with easy chart describing what local organizations do (working on this now, too); and
  • Genetic counselors wanted to share problematic situations — and we listened. Some were definitely challenging.

Next steps:

  1. Maintain and expand relationships with medical community, and
  2. Provide resources to support genetic counselors.

Prenatal Screening Survey

California Down Syndrome Advocacy Coalition is collecting data on prenatal screenings and diagnosis delivery in California. We would be honored to include your experience.

We will be collaborating with Down Syndrome Diagnosis Network to hopefully improve experiences for people receiving prenatal screening and/or diagnosis results.

Please complete the 4-5 minute survey below.

This survey is of Californians only. Thank you for sharing!

As always, we thank you.

Kelly and Cathleen


#Toolkit Questions for Candidates

White background, blue CDAC logo, California Down Syndrome Advocacy Coalition Toolkit: Candidate Questions

If you want to start asking political candidates questions, this #toolkit might help you get started. Included are questions for school boards, state senate, assembly, Congress and governor. Since we are in California, the questions refer to our state systems, but if you are elsewhere, feel free to use this as a starting point.


Toolkit questions for candidates California Down Syndrome Advocacy Coalition




Toolkit – candidates for offices

White background, blue CDAC logo, California Down Syndrome Advocacy Coalition Toolkit: Candidate Questions

We are in the final stages of assembling the CDAC Toolkit “Questions for Candidates” so you can start asking your candidates about their knowledge and views regarding people with disabilities.

We received our first candidate’s response this week.We send a heartfelt thank you to Jess Phoenix for taking time to respond to questions important to our community.

If you have additional questions you’d like to have answered, please send us a note at

We are sharing information from any candidate willing to respond. These are not endorsements, rather attempts to engage candidates on issues impacting people with Down syndrome.

Candidate: Jess Phoenix


Office sought: US Representative

District: California’s 25th district

·      What is your understanding of competitive, integrated employment? What is the employment rate of people with disabilities in [your district/California]?

Competitive, integrated employment is essential for people of all abilities to live full lives. Employment opportunities for people with disabilities of all kinds need to have opportunities to earn competitive wages in integrated places of employment. According to the State Council on Developmental Disabilities, in California, the employment rate for people with any disability is 33.9%. I have not found reliable data specific to my district, which includes parts of both Los Angeles and Ventura Counties.

·      How does long-term Medicaid stability or instability impact people with disabilities?

Long-term Medicaid instability negatively impacts people with disabilities by placing undue stress and ultimately financial and caregiving burdens on people with disabilities and their families. Having access to affordable healthcare is critical for people with disabilities to maintain an acceptable standard of living, as well as for maintaining education, employment, and social commitments.

·      How does Medicaid support people with disabilities in your district?

My district has services for people with disabilities through Medi-Cal, the state program for people with disabilities.

·      Do you have people with disabilities working on your campaign? In your district office? On Capitol Hill?

Yes. We have people with both physical and learning disabilities working on the campaign.

·      Are you familiar with the Hill program to support employment of people with Intellectual disabilities? Do you commit to hiring people with disabilities, as a leader in our community?

Yes, I am familiar with this program. I firmly commit to hiring people with disabilities.


Thank you, Jess Phoenix!

AB 2039

A huge thank you to Asm. Vince Fong (Bakersfield) for sponsoring AB 2039 – CalABLE Tax Deduction. Here’s a lovely little piece on Medium about the bill. If your Assembly Member is willing to coauthor this legislation, please contact Sara Zarate Bauman in Asm. Fong’s office. Her email address is in the #AB2039 fact sheet below.


The reason it matters:

AB 2039 will provide a state tax deduction to individuals who contribute to CalABLE savings accounts benefiting individuals with disabilities. Traditionally impacted by high poverty rates, people with disabilities and their families want to save for their futures, and this bill will help make that possible. This bill could be the difference for some families saving for the future, and simply not being able to afford to save because of the extra costs associated with having a disability.

When it finally opens, we want to ensure the long-term sustainability of CalABLE. There are concerns around the country that this program has been underutilized. As a result, there are growing fears that they will not be viable past the five year implementation period many states have in place. If California has the strongest program, we may have the most attractive option for not only Californians, but for the nation.

Help us make #CalABLE #sustainABLE.

Thank you!



AB2039_Fact Sheet

coauthor requst letter AB 2039

#NoOnHR620 #HandsOffMyADA #armchairadvocacy #makeacall #votenoHR620

HR 620 is unnecessary. There are ways to get rid of frivolous lawsuits without eroding protections for people with disabilities.

Action alerts from National Down Syndrome Congress and NDAC (National Down Syndrome Advocacy Coalition) make for easy #armchairadvocacy


C-C-D letter


May 25, 2017
Via Email
California Delegation in the U.S. House of Representatives
Copies to:
Members, Committee on the Judiciary, U.S. House of Representatives
The Honorable Dianne Feinstein, U.S. Senate
The Honorable Kamala Harris, U.S. Senate
RE: California Organizations Strongly Oppose H.R. 620, the ADA Education and Reform Act of 2017, and Call on Their Representatives to Oppose This Legislation
Dear Members of the California Delegation:
The undersigned are 110 California disability, civil rights, senior, and civic organizations that collectively represent hundreds of thousands of Californians who have or may acquire a disability. We urge you to protect the Americans with Disabilities Act (ADA) and to oppose H.R. 620, the inaptly named ADA Education and Reform Act of 2017.
The ADA was modeled on other civil rights statutes. Indeed, in enacting Title III of the ADA, Congress incorporated the remedial structure of Title II of the Civil Rights of 1964.1 This decision recognized that disability access is a civil rights issue, and aligned disability protections with the protections offered to other diversity characteristics. To change this remedial structure – to impose on individuals with disabilities a unique ADA “notice” requirement before a public accommodation must ensure access – is to go backwards. It would mark disability as a lesser issue than other civil rights issues, in contravention of decades of federal policymaking.
On a practical level, the legislation would effectively exempt businesses from compliance with Title III of the ADA, but would do nothing to resolve the problem proponents seek to address – a small group of individuals who are viewed as bringing harassing or unjustified access lawsuits against small businesses. By undermining voluntary compliance with longstanding
1 See 42 U.S.C. § 12188. “Return to Main Document”
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May 24, 2017
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civil rights standards, H.R. 620 would cause substantial harms by furthering the continued exclusion of individuals with disabilities from the basic public accommodations of daily life.
H.R. 620 erodes the balancing of interests in the ADA by removing incentives for businesses to comply with the law, and by placing excessive burdens on individuals with disabilities.
Almost 27 years ago, the ADA was carefully crafted as a bipartisan compromise to take the needs of individuals with disabilities and covered entities – including large and small public accommodations – into account. Title III of the ADA requires architectural changes to existing structures only when such changes are “readily achievable, i.e., easily accomplishable and able to be carried out without much difficulty or expense,”2 and the law defines “readily achievable” with explicit reference to the size and resources of the business in order to accommodate small businesses.3 Further upgrades are only required when an entity engages in new construction or alteration.4
Under the current ADA, a business that chooses not to remove architectural barriers under this framework risks a lawsuit; this was intended as a powerful incentive to comply so that people with disabilities would have the access they are entitled to under law. But H.R. 620 would make it far more advantageous for a business to delay doing anything to ensure access for all until it receives a notice that someone was not able to access their public accommodation. This is because, once notice is received, the legislation would grant the business up to six months to make “substantial progress” in removing the barrier described in the notice. This means a business could spend years without actually removing barriers to come into compliance with longstanding access standards, and face no
2 28 C.F.R. § 36.304(a). “Return to Main Document”
3 28 C.F.R. § 36.104 (“In determining whether an action is readily achievable factors to be considered include … [t]he nature and cost of the action …; … [t]he overall financial resources of the site or sites …; the number of persons employed at the site; [and] the effect on expenses and resources[.]”).“Return to Main Document”
4 28 C.F.R. § 36.401 et seq. “Return to Main Document”
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penalty, so long as “substantial progress” can be claimed. Even our largest and most ubiquitous corporations – from Wal-Mart to Starbucks – would be entitled to these exemptions. This upends the careful balancing reached by the drafters of the ADA.
Equally misguided, the legislation requires that an individual provide written notice that identifies the “architectural barrier to access into an existing public accommodation,” and the circumstances “under which an individual was actually denied access to a public accommodation,” but then only requires that the entity remove “the barrier” identified. A plain reading of the legislation suggests that the business need only remove the initial barrier that actually denied access, but not all of the additional barriers that the individual would experience could she ever get past the initial barrier. The doorway may be fixed – over a period of six months or longer – but then the restroom inside may require another notice! The only plausible conclusion from such a scheme is that its underlying purpose is to simply make disabled individuals give up and go away. That is totally contrary to the values of inclusion and full citizenship enshrined in the ADA.
Additionally, the notice requirements in the bill are unduly burdensome and technical, requiring the disabled individual to provide far more information than is necessary to identify the barriers and exclusions experienced, including citations to “the specific sections of the Americans with Disabilities Act alleged to have been violated.”
H.R. 620 does not solve the problems it seeks to address, many of which can be fixed through existing means.
H.R. 620 is not tailored to address any problem there may be of a few unscrupulous individuals who send demand letters or who file litigation not to achieve legitimately required access changes but to obtain a monetary payout.5 Unlike California state law and the law of several other states, Title
5 California disability advocates have worked in good faith for years to address this perceived problem, supporting the creation of the Certified Disability Access Specialist program and the California Commission on Disability Access. California state law regulates attorney demand letters
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III of the ADA only provides for “injunctive relief,” the requirement to fix the access problems. Title III does not allow for money damages. Thus, the legislation would allow the exclusion of individuals with disabilities from public accommodations while making no change that would actually deter the stated problem.
And the legislation would undermine implementation of the ADA despite existing and effective mechanisms for regulating civil litigation and attorney conduct. Federal and state courts in California already have extensive authority to manage civil actions based on the failure to remove architectural access barriers with streamlined procedures.6 And state and federal courts are well-equipped to impose an array of sanctions for improper attorney behavior in disability access cases.7
California businesses that seek to comply with federal and state access laws have access to numerous free and affordable resources, including the U.S. Department of Justice’s (DOJ) ADA website (, the DOJ hotline, the ten federally funded regional ADA centers (,
and prescribes early and assertive case management measures in disability access matters. “Return to Main Document”
6 See General Order No. 56, Americans with Disabilities Act Access Litigation, at; Cal. Civ. Code § 55.54. “Return to Main Document”
7 See, e.g. Molski v. Mandarin Touch Rest., 359 F. Supp. 2d 924, 928 (C.D. Cal. 2005), aff’d sub nom. Molski v. Evergreen Dynasty Corp., 500 F.3d 1047 (9th Cir. 2007) (requiring leave of court for new filings); Jankey v. Belmont Restaurant, 2:04-cv-08617-MMM-SH (C.D. Cal. Apr. 26, 2005) (disqualifying attorney); In the Matter of Thomas E. Frankovich, No. CV06-2517 (C.D. Cal. June 23, 2006) (suspending attorney from practice in court for six months); Kinney v. Bridge, No. 3:16-CV-03211-CRB, 2017 WL 492832, at *4 (N.D. Cal. Feb. 7, 2017) (requiring filing of court’s order in new matters); Deutsch v. Henry, No. A-15-CV-490-LY-ML, 2016 WL 7165993 (W.D. Tex. Dec. 7, 2016), at **22-24 (awarding attorneys’ fees and costs to defendant); see also In the Matter of Thomas Edward Frankovich, Member No. 74414, Nos. 04-O-15890-PEM & 06-J-13032 (State Bar Court of California, June 25, 2009) (finding violation of the rules of professional responsibility). “Return to Main Document”
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and California’s Certified Access Specialist Program and its Commission on Disability Access. Businesses that come into compliance can use existing tools to respond to and shut down unjustified access claims.
In conclusion, H.R. 620 is an unnecessary and poorly considered measure that would fundamentally harm our nation’s progress toward an accessible and integrated society. The bill further telegraphs to individuals with disabilities, including Californians with disabilities, that their inclusion is not important. Please do not support this legislation.
– Access to Independence
– ACLU of Northern California
– ACLU of San Diego & Imperial Counties
– ACLU of Southern California
– Alpha Resource Center of Santa Barbara
– ASAN (Autistic Self-Advocacy Network) Los Angeles
– ASAN Sacramento
– ASAN San Diego
– Asian Americans Advancing Justice – Los Angeles
– AXIS Dance Company
– Bet Tzedek Legal Services
– California Advocates for Nursing Home Reform
– California Coalition of Agencies serving the Deaf and Hard of Hearing
– California Disability Alliance (CDA)
– California Foundation for Independent Living Centers (CFILC)
– California In-Home Supportive Services Consumer Alliance (CICA)
– Californians for Disability Rights, Inc.
– Central Coast Center for Independent Living
– Civil Rights Education and Enforcement Center (CREEC)
– Coalition on Long Term Care Services and Supports
– Communities Actively Living Independent & Free (CALIF)
– Community Legal Services in East Palo Alto
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– Community Resources for Independent Living (CRIL)
– Contra Costa Arc
– Dayle McIntosh Center
– Desert Arc
– Desert Area Resources and Training
– Designing Accessible Communities
– Disability Action Center
– Disability Rights Advocates
– Disability Rights California
– Disability Rights Education & Defense Fund (DREDF)
– Disability Services and Legal Center
– East Bay Developmental Disabilities Legislative Coalition
– Easter Seals California
– Easter Seals Southern California
– Educate. Advocate.
– Epilepsy California
– Epilepsy Foundation of Northern California
– Epilepsy Foundation San Diego
– Epilepsy Foundation Greater Los Angeles
– Exceptional Family Center
– Exceptional Parents Unlimited (EPU)
– FREED Center for Independent Living
– Gray Panthers of San Francisco
– Greater Los Angeles Agency on Deafness (GLAD)
– Hand in Hand: The Domestic Employers Network
– Independent Living Center of Southern California
– Independent Living Resource Center San Francisco (ILRCSF)
– Justice in Aging
– Law Foundation of Silicon Valley
– Legal Aid at Work
– Little People of America—Los Angeles Chapter
– Little People of America—Orange County Chapter
– Little People of America—San Francisco Bay Area Chapter
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– Little People of America—San Joaquin Chapter
– Marin Center for Independent Living (MCIL)
– Matrix Parent Network & Resource Center (Matrix)
– National Coalition for Latinxs with Disabilities (CNLD)
– NFB of California
– National Organization of Nurses with Disabilities
– NorCal Services for Deaf & Hard of Hearing
– Parents Helping Parents (PHP)
– Personal Assistance Services Council
– Placer Independent Resource Services (PIRS)
– Pushrim Foundation
– Resources for Independent Living (RIL)
– San Diego Volunteer Lawyer Program
– Senior and Disability Action
– Service Center for Independent Life
– Silicon Valley Independent Living Center (SVILC)
– Sonoma County SCI Support Group
– Southern California Against Forced Treatment
– Support for Families of Children with Disabilities (SFCD)
– Team of Advocates for Special Kids (TASK)
– The Arc Alameda County
– The Arc of Amador and Calaveras
– The Arc of Butte County
– The Arc of Fresno and Madera Counties
– The Arc Imperial Valley
– The Arc Los Angeles and Orange Counties
– The Arc of Placer County
– The Arc of Riverside
– The Arc – San Bernardino Area
– The Arc of San Diego
– The Arc San Francisco
– The Arc of San Joaquin
– The Arc – Solano
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– The Arc – South Bay
– The Arc – Taft
– The Arc & United Cerebral Palsy California Collaboration
– The Arc of Ventura County
– The California Collaborative for Long Term Services and Supports
– TheCIL
– The Impact Fund
– UCP (United Cerebral Palsy) of Central California
– UCP of the Golden Gate
– UCP of the Inland Empire
– UCP of Los Angeles, Ventura & Santa Barbara Counties
– UCP of the North Bay
– UCP of Orange County
– UCP of Sacramento and Northern California
– UCP of San Diego County
– UCP of San Joaquin, Calaveras & Amador Counties
– UCP of San Luis Obispo
– WarmLine Family Resource Center
– Westside Center for Independent Living (WCIL)
– Worksafe
– Wry Crips



So you want to make a difference

I can’t tell you how many times people tell me how they want to get in to advocacy, but they just don’t have the time. Guess what?  Active advocates don’t have time either. Most of us have families. Most have full-time jobs… rarely do those jobs include advocacy. Advocacy is something I fit in between the minutes I find. I do my best, but I certainly don’t do it all. I have a community of knowledgeable, passionate advocacy friends. I learn from many people and organizations. You can, too. Purple background words related to advocacy

Find one thing. Don’t think you have to do it all. Find the one area you are passionate about, and do one thing.

Make one call.

Send one email.

Visit one representative’s office.

You aren’t doing this alone. You are standing on the shoulders of men and women who have been doing this for a long, long time.

Change one thing. Just one. Then, the second one will come. It’s like any good habit. It takes time, but once it’s there, it will be second nature. You won’t have to think about finding time. It will simply be part of your life. A part of your life you never knew you were capable of developing, but somehow you did.

Here are some places to start: