News, Information, & Opportunities for California's Intellectual & Developmental Disability Community
May 1, 2017
IN THIS MEMO:
Big Turnout for Capitol Rally, $500M for Community Services
NEW!!! Cutting Through The Fog, A Self-Advocacy Column
Mayday! Mayday! Mayday! Call Congress and Say NO to American Health Care Act
AB 959, Fighting Unjust Disparity for Non-White Children with I/DD
National Stroke Awareness Month: Unique Needs of People with I/DD
Share Your Medicaid Story!
The Arc US, Call For Proposals for National Convention
New Reports & Studies Related to Intellectual & Developmental Disabilities.
Jobs, Funding Opportunities, & More
The Arc California's incoming President, Betsy Katz, speaks about
the importance of retaining funding for community services to a large
crowd at the state Capitol on Wednesday.
FUNDING FOR COMMUNITY SERVICES
We Showed Up In Numbers!
Wednesday, April 26th, the Arc of California, along with our community
partners, showed up in force at the Capitol for a rally aimed at
retaining money for community services. The issue being discussed was a
proposal put forward by Assemblyman Devon Mathis (R - Visalia) which
would require the state to use money saved from the closure of
developmental centers for the benefit of community services, instead of
simply going to the state's general fund.
Speakers at the rally included
many parent advocates and self-advocates. Several legislators were also
in attendance and spoke in favor of the proposal, including:
Assemblyman Devon Mathis
Assemblyman Chad Mayes
Assemblyman Tom Lackey
Assemblyman Dante Acosta
Assemblyman Kevin Kiley
Assemblyman Frank Bigelow
for The Arc of California, Jordan Lindsey, kicked off the rally
summarizing the importance of this issue and the need for the additional
funding (watch below).
Lindsey, Executive Director of The Arc of California, kicks off the
Capitol rally for the developmental disability community.
LANTERMAN COALITION OPPOSES AMERICAN HEALTH CARE ACT
Letter Sent To California Congressional Delegation
The Lanterman Coalition, consisting of 24 statewide organizations
representing Californians with intellectual and developmental
disabilities, opposes the American Health Care Act. To view the letter
The Arc and other coalition members signed on to, click here.
CUTTING THROUGH THE FOG
A self-advocacy column by Eric Gmeinder
What Are We Waiting For?
Guest Writer, Eric Gmeinder
the suppression of disadvantaged groups in the Western world invites
laments like, "Can you believe people used to treat them like that?"
Someday they'll say the same thing about people with intellectual
the reason they don't already is that, although many people are
tolerant of disabled individuals, they're not aware of the struggles we
go through. All that many of them know they learned from Hollywood. Some
people with disabilities may always have the abilities of a
two-year-old; others are impossible to tell apart from other adults, and
the vast majority fall somewhere in between.
have high-functioning autism, and my story is a typical one for people
at my level. I can type up to eighty words per minute, write brilliant
classical music, and am like a walking, talking almanac of historical
facts. I don't have a community college certificate and minimal work
experience because I'm lazy or stupid; I don't have them because of my
struggles with anger and agoraphobia, and those were so bad that I'm
lucky to have even as much as experience as I do.
that didn't matter back when I was job hunting and my agency asked me
to apply against people with more experience. Whether they meant to or
not, employers punished me for something I couldn't help. On the
occasions I was called in for an interview, I was sometimes asked about
it. I dared not mention any disabilities, because the Americans with
Disabilities Act, which is supposed to grant us civil rights
protections, doesn't exist in practice. But my inability to behave
perfectly during the interview probably gave them away just the same.
I am attending Futures Explored Practical Film & Media Workshop, a
film and media training program for young adults with disabilities. One
of the projects I am currently involved in is a short documentary about
"autism as a natural state vs. autism as a disease." As I work my way
into the independent film scene, I'm keeping a list of issues to which
to commit myself, and this is certainly one of them.
reason that people don't feel as sorry for us as they do for other
groups is that we've never had a large activist movement. They all began
with an inciting act of disobedience like Rosa Parks or the Stonewall
Riots. Exactly which corresponding event in the disabled community would
happen is unclear, but it should happen soon-and the neurotypical world
needs it more than it knows.
THE ARC UCP CALIFORNIA COLLABORATION
Public Policy Report
Fighting The Unequal Treatment of Non-White Children in the Community Developmental Services System
Greg deGiere, Director of Public Policy
California in recent years has become aware of the unjust disparities in resources and services allocated to minority children with intellectual and other developmental disabilities.
As of 2012, white consumers received
an average of $15,817 in services through regional centers, while
African American consumers received $12,270 and Latino consumers
received $7,247. According to an Assembly Human Services Committee
analysis, that hasn't changed much in five years.
These disparities came to light in a
2011 Los Angeles Times series that found parents whose children receive
better services are wealthier, more sophisticated in navigating
bureaucratic systems, and more fluent in English. Parents who worked
multiple jobs, single parents, immigrants, those who could not speak
English, and those with multiple children were less
able to access services.
We've supported successful bills over
the last few years to have the state step up to its responsibility for
eliminating these disparities.
This year, we're supporting Assembly Bill 959 by Assemblymember Chris Holden.
If enacted, the bill will require a regional center to post additional
information on its Web site and increases consumer access to vendors who
are vendorized by a regional center outside the consumer's regional
center catchment area.
Specifically, AB 959 will require each
regional center to post a list of services provided by the regional
center or through community community-based service providers such as
Arc chapters and UCP affiliates. The Web posting will use a statewide
format and be updated at least quarterly.
The bill also will prohibit a regional center from denying a
consumer access to a provider that is
vendorized by a regional center based solely on the fact that the
provider is not vendorized by the regional center in the consumer's
Assemblymember Holden intends the bill
to ensure that every consumer has access to quality and specific
services. Making a standardized list of provider services will empower
consumers by knowing what services they offer and allowing them to
advocate for a service where they believe their child would benefit.
Placing this information in a prominent location and in plain language
that is understandable will enable parents to become more informed and
engaged before and after the IPP meetings. The more a parent can
understand the service
s being offered to their child, the more they can navigate the information to ensure the best opportunities for their child.
The bill will also make sure the consumer is not denied access to certain providers because of an individual regional cent
er policy to refuse a consumer access
to a provider based solely on its geographic location. For example, if a
family moves and a parent seeks to remain with their current service
provider who is outside the catchment area of their new regional center,
they should be able to have access to that service provider for their
quality and continuum of care.
AB 959 passed the Assembly Human
Services Committee 7-0 and is headed for what is always an uncertain
fate in the Assembly Appropriations Committee.
Public Policy Director
ADVOCACY & COMMUNITY ORGANIZING
Tim Hornbecker, Director of Advocacy and Community Organizing
May Day! or Mayday!
When I was a kid, I only knew
May Day as a spring festival, with a traditional May Pole
where children grabbed ribbons from the pole, singing and dancing as
they went around in a circle! It was originally an ancient pagan
celebration marking the beginning of summer. Growing up Irish Catholic
on my mother's side of the family, these Gaelic traditions were blended
into songs about Mary, Jesus' mother, with homemade shoebox shrines and
statues of Mary with flower wreathes.
Little did I think that later in my life as a community organizer, I would learn that May 1st
is also a major holiday celebrating labor around the world, but
starting in this country in 1886. At that time, the labor movements were
advocating for fair wages and especially an 8 hour work day. In
Chicago, 40,000 people went on strike that first May Day, a day chosen
to commemorate the killing of four people at a peaceful protest the year
before! But that was the tip of the iceberg! Over 300,000 workers in
13,000 businesses in the US walked off their jobs in protest on that First International Workers' Day.
We owe so much to those early organizers, from child labor laws to 40
hour work weeks with sick leave and healthcare! Yes, I said Healthcare!!
Now that's what I call responding to an ACTION ALERT! Yet here we are on May 1st,
2017, and The Arc of the United States and California are asking you to
protest even more actively in order to save the dismantling of our
Medicaid (Medi-Cal in CA) healthcare system that has just been expanded
to cover even more of our families and their children with intellectual
and developmental disabilities. Cutting Medicaid in order to pay for the repeal and replacement of the ACA with the AHCA
is unconscionable! The President and legislators must do better than
what was proposed last week. Thanks to your phone calls, moderate
politicians were not willing to provide the votes necessary for passage.
But that could change this week! Please, you still need to contact your
elected officials in DC and tell them to "Just Say No!"
Although this distress call originates from the French "m'aidez" and
has nothing to do with May Day, I am asking you today and all week to
shout out "Mayday!Mayday!Mayday" (always said 3 times in a row) to legislators to stop healthcare and Medicaid from sinking!
High blood pressure, diabetes and heart
disease are among the leading risk factors for stroke. High blood
pressure is the single greatest modifiable cause of stroke, which is
often described as the brain equivalent of a heart attack. Research
shows high blood pressure affects nearly 30% of U.S. adults without
disabilities but increases significantly for adults with intellectual
and developmental disabilities (I/DD) (approximately 37% for people with
I/DD and 40% for those with mobility limitations). Of even greater
concern is the evidence that suggests nearly half of the people that
have high blood pressure are undiagnosed and do not know they have it.
Recognizing the signs of stroke is
critical to getting timely care, reducing brain damage and improving
outcomes. Some basic warning signs of stroke include; any sudden
weakness or numbness (face or limb and specifically on one side of the
body), sudden severe headache (no discernable cause), sudden onset
confusion, unable to talk or speech is unclear, inability to understand
what is being said, sudden vision changes, trouble walking, maintaining
balance or dizziness. However, reading the warning signs you can see
how challenging it could be to determine if someone with I/DD is
experiencing a stroke, as many of the signs are common for people with
I/DD. For example a person with cerebral palsy is likely to have
trouble walking or maintaining balance as well as have difficulty with
speech. Communication and mobility challenges for many people with I/DD
make it hard to recognize many of the warning signs or assess a person
using a standard, simple, medically approved method known as smile, talk, raise (STR).
Unfortunately, there is not an easy
answer or specific checklist that is universal to recognizing stroke
symptoms in people with I/DD. People with I/DD have unique and
individual heath care needs and often their health depends on those
close to them recognizing subtle changes. Especially important is
routine blood pressure screening so any changes can be caught early and
individual health/lifestyle modifications can be made. It is also
important to talk with your health care provider to discuss concerns,
risk factors, signs and symptoms that may be uniquely individual and
information that can be shared with family, friends, employers,
providers, etc. For more information about stroke prevention and
treatment visit the following resources:
Members of Congress are still
considering repeal of the Affordable Care Act (ACA) with
significant cuts to the Medicaid program. The most effective way to get
your message across is to share your story about the importance of the
ACA and why Medicaid matters to you. Telling your story will help
personalize the issue and is an effective way to protect Medicaid.
Why should we in California care?
adults with developmental disabilities, Medicaid is their health
insurance. It pays for care from doctors, specialists, and hospitals, as
well as prescriptions.
*California, like all states, receives
Medicaid funding to help pay for the cost of long-term supports that
people with developmental disabilities receive. If you or someone you
know receives services paid for by a Regional Center, Medicaid most
likely helps pay for it. Medicaid currently pays approximately half the
cost of many community services through Regional Centers.
Thousands of Californians with
developmental disabilities depend on Medicaid - or will need it in the
future - to remain healthy, live in the community, and stay out of
costly institutions. Many other groups of people will also be affected.
If this current approach passes, Medicaid in California would be significantly impacted.
It is important to share your story of Why Medicaid Matters to You.
What you can do: TELL YOUR STORY
Your Congressional Representatives and
Senators need to know the impact Medicaid has on people's lives - and
they need to know now. They know that Medicaid provides health coverage
but may not realize all the other things Medicaid does, like funding
In-Home Support Services (IHSS).
If you or someone you know relies on
Medicaid-paid services as described above -- or will in the future --
take these two easy steps:
1. Think about "Why Medicaid Matters to Me."
2. Share your story here
-- briefly tell us the positive impact healthcare services and
community supports have had on your life or the life of someone you care
about. For example, how have Regional Center services helped you stay
healthy, get or keep a job, live on your own, or do the things you
Check out this video from the National Association of Councils on Developmental Disabilities explaining why it's important to share your story.
CALL FOR PROPOSALS,
Arc NATIONAL CONVENTION
The Arc's 2017 National Convention San Diego, California | November 1 - 4, 2017
This year's convention will be held at theSheraton San Diego Hotel & Marinaa
in San Diego, CA on November 1-4, 2017.
with disabilities, their families, chapters of The Arc staff and
volunteers, and others in our field and the business community need
innovative solutions that will fuel our motivation and spark our spirit
for collaboration. We are looking for knowledgeable, experienced
Expertise in critical issues important to people with intellectual/developmental disabilities (I/DD) and their families.
in fields and environments outside the disability community that
highlight light novel perspectives and strategies that may translate.
A proven track record of presenting at national/international meetings in an engaging and interactive manner.
ability to deliver information to a diverse audience including people
with I/DD, families, professionals, business leaders and members of
boards of directors.
you have the passion to educate and energize the over 700 individuals
who enthusiastically carry out our mission and values every day we
invite you to submit a proposal to speak at The Arc's National
Don't delay - all proposals must be submitted no later than 11:59 p.m. EST on Friday, April 21, 2017.
begin, either create a new account or login below if you already have
an account. You may return to your submission page to make changes until
the deadline for the call closes on Friday, April 21st at 11:59 pm
If you have any questions, please contact Kerry Mauger at email@example.com. The Arc will contact you by May 22nd to inform you about the status of your submission.
By the Center for Business Innovative Research (CBIR)
The following grant opportunity postings were made on the Grants.gov Find Opportunities service:
Achieving a Better Life Experience (ABLE) Act Board for People with
Disabilities is now seeking Investment Consultant Services. All
interested in responding to this Request for Proposals ("RFP") may find
it on the Cal E-Procure website. Please search for the RFP using Event IE: 4330.
Department of Health and Human Services Substance Abuse and Mental
Health Services Adminis Grants to Expand Substance Abuse Treatment
Capacity in Family treatment Drug Courts [Short Title: Family Treatment
Drug Courts (FTDCs)] Synopsis 1
Arc of California posts job announcements in the Career Ladder section
every week because we would like to contribute to steering quality
candidates to professional positions that support people with
disabilities and we are trying to communicate to Direct Support
Professionals that there is a real "career ladder" in their chosen
Legislative Director position is based in Sacramento and is part of the
team responsible for DRC's legislative activities in California. The
position reports to the Advocacy Director. The Legislative Director
provides overall direction to DRC's public policy activities with the
goal of increasing DRC's legislative presence. The position supervises
The Arc California 1225 8th Street, Suite 350 Sacramento, CA 95814 916.552.6619
Advocates for people with intellectual and all other developmental disabilities and their families since 1950.