Member of the
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for more information, go to the
Special Needs Alliance Website
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I'm wondering if you ... have any advice on advocacy burnout.
I'm starting to dread all the messages in my in-box requiring urgent action on
my part to protect James' services and
the services of others. It's especially hard when so many recent efforts I've
participated in have failed. Though I realize the importance of these efforts,
and want to contribute, it's becoming an emotional drain.
Rachel, mama to James, 3 and a half, and Isabel, 20 months
Hi, Rachel
I appreciate you
sharing your point of view and feelings on this issue, and I can assure you,
you are not alone! I think it is ok to
give yourself a break when you need it, because we are all juggling so many
things in our own lives. Every effort you are able to make is great, but your
own sanity and well-being is very important, too, especially for being able to
support your family and children. Sometimes, you have to step back a little
from fighting for the greater good to be there for your family.
There are certain
issues that you will find more compelling that others, so pick and choose you
focus. Try to remember to pat yourself
on the back when you do have the time and energy to do something rather than feel
guilty when you don't. For everything
that you are able to do, there are many families who appreciate your efforts to
give voice to the perspective that they share with you but may not have time
themselves to invest in this way.
Steve
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We are dedicating a section of each newsletter to answer YOUR
questions. If you have a question on any
of the following subjects, or if you have an idea about a different issue,
please send that question to our Editor at: editor@dalelawfirm.com
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Upcoming subjects:
Housing
Personal Care
Public Benefits
Employment
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Important Links
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This month we are highlighting links to
help you stay up-to-date on the current budget issues:
The ARC of
California
One of the best sites for information and referral
services in California. Don't forget to
check out their Calendar of Events!
www.arc.california.org
California
Disability Community Action Network
This
website is run by an amazing advocate by the name of Marty Omoto. Don't miss his weekly alerts which provides detailed
information on many issues faced by the disabled (see Page 4)
www.cdccan.us
Disability
Rights California
Listed on their website as California's protection and
advocacy system, this program provides resources to help advocate for citizens
rights. Make sure and keep an eye on
their Analyses section
www.pai-ca.org
NAMI
California
is the leading organization for families and
individuals dealing with mental illness. Their home page lists a number of important
articles and updates. Also look for the link
to sign up for their news alerts!
www.namicalifornia.org |
This
Month's Community Program Highlight
THE
CALIFORNIA DISABILITY
COMMUNITY ACTION NETWORK
Advocacy
Without Borders
Connecting thousands of
people with disabilities, mental health needs, seniors, families, workers, low
income families to disability rights, senior rights, civil rights and unified
action
SIGN
UP BY CLICKING HERE FOR FREE CDCAN REPORTS
AND ALERTS!
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This Month's Video Highlight
Free video access to recorded workshops are available at the Achieving
Independence website.
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Special Promotion
New
clients will receive a discount on their estate planning if they attend a
workshop, watch an on-line video or view a free educational DVD from the Dale
Law Firm.
For more information, go to the "Workshop and
Seminar Materials" section of the Achieving Independence website.
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Achieving Independence
A Newsletter for People with Disabilities and Their Families
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This issue's focus:
California's Budget Crisis!
Dear Reader:
We'd like to welcome you to our first issue of "Achieving Independence", a quarterly
newsletter presented to you by The Dale Law Firm. The purpose of this publication is to bring timely
information and news to disabled people, their families and support systems
throughout the Bay Area and beyond.
Because we know that you have many issues that you must face when
dealing with special needs, we have decided to focus on one issue each edition. Unfortunately for us all, it was easy to pick
this issue's subject:
California's
Budget Crisis and how it will affect our special needs families!
We have structured this newsletter to be shared electronically. You will find that the Table of Contents,
the Calendar and many parts of our Newsletter contains hyperlinks. This should assist our readers in finding out
more about items they find of interest. If you have friends or family who could use this information, forward this e-mail on and encourage them to sign-up for a free subscription (we would NEVER charge for sharing information!)
We welcome your questions and comments. In fact, one of our features will be a
section entitled "Ask Steve" where we will highlight
some of the burning questions our families face today.
Let me personally invite you to contact me with
questions, comments and suggestions. You
can reach me by calling (925) 280 - 0172 or by writing editor@dalelawfirm.com
Happy
reading!
Nina
S. Jones, Editor
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What Can We Do?by Stephen W. Dale, Esq.
THESE ARE TRULY HISTORIC TIMES
Take a moment and remember the time before you had a
disabled child. Did you know about IEPs, regional centers, IPPS and so on? Did
you have any idea of the complexity of our disability system? Most Californians including legislators have
little to no knowledge regarding our system and the needs of our disabled loved
ones.
I do not remember a time that our social service system
wasn't in deep trouble. Our system has never been properly funded and for many
years it has been hanging by a thin thread. The current system we have under
the Lanterman Act was hard fought by advocates over 40 years ago. With California's historic budget cuts, most
programs are in danger of being dismantled. The long term effect of these cuts
are likely to limit options for residential programs and basic supports persons
with disabilities need in order to live independently. The consequences seem
universally devestating - but time will tell.
The obvious fact is that the system is on the verge of a
frightening reversal of services and even though it may feel like too little,
too late, action now can still make a difference. We all realize that what is
happening now is going to affect our children and our community for years to
come. The problem is that these cuts are happening so quickly that the advocacy
community can't react fast enough.
Everyone is in a panic mode as evidenced by the rapid fire alerts from
advocates and community programs throughout the State.
WHAT CAN YOU DO?
The big question at this moment is "how many services
are we going to lose?"
I don't want to be a fatalist but cuts are coming - like it
or not. Forget the trickle down theory.
California's budget cuts are causing a tidal wave of destruction beyond
just state programs.
Many parents are becoming overwhelmed. Having a disabled
child by its nature can be exhausting even without having to deal with the
fallout of lost services.
My first piece of advice is "don't feel pressured and
don't feel guilty". Do what you can do within your resources. By having a
child with a disability you were drafted into our system and you have a role as
an advocate. Decide what you can best
accomplish. Do you have the opportunity
to teach your family, church members, colleagues and so on about the value of
our disabled loved ones? Perhaps you can
write letters or attend meetings and rallies to advocate with decision makers
about your family's needs and to hold them accountable. Maybe your best support
is in writing a check. Even the simple
act of being a loving parent living openly in the community sets a good example
that shows the world that persons with disabilities are valuable and worth our
love and attention. Even so - know your
limits.
Second - do what you can do to learn about our system -
both it's strengths and its weaknesses. In the end, this knowledge will make
our system stronger....a system built by parents like you. Obviously it needs some shoring up.
Third - be part of a support organization. Share your
feelings, seek and share support.
A LONG ROAD AHEAD
That being said - one needs to take on a long term vision.
Recessions end - and what is important is the long term. When the economy turns
around your voice will be needed.
The dismantling of the state hospital system in favor of
community programs began during the Kennedy
administration with a promise that the resources spent on large institutions
would be moved to the community. Unfortunately despite its achievements, our
community social service system has always been a house of cards. What is
important as we lick our wounds and begin to regain lost ground is to build an
even stronger system. We need to look at every part of our system, identify its
deficits, and make our system stronger.
For instance -for decades the service providers that provide direct care have
been shorted and this created a system that undervalues their contributions. I have long advocated that trying to operate
our system on a shoestring budget subjects our most vulnerable citizens to
abuse and neglect.
PROVIDE WHATEVER SUPPORT YOU CAN WITHIN YOUR RESOURCES
I work with many disability organizations and communicate
regularly with their directors and officers. Most organization have already
experienced a drop in funding and membership. For them to survive, we need to
voice our support while they advocate for our needs. It doesn't need to be
much. Believe it or not an unsolicited $20 contribution to any of our advocacy
organizations goes a long way. Not only does it help to continue the fight -
but it gives a much needed message to our warriors that you appreciate what
they do to advance your loved ones needs. Almost all of the disability
organizations fighting these cuts are feeling the same anxiety and burnout you
are feeling - and they could all probably use a hug.
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Some workable suggestions for cutting the budget by the
Lanterman Coalition
- The California based Lanterman
Coalition has drafted the following suggestions for finding ways to cut program
budgets while protecting services to the disabled community
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Distribute the cuts because the
additional cuts cannot come solely from the services component of our system
(there are four components of the system, i.e., Regional Center Operations,
Regional Center Purchase of Services, Department Headquarters, and Developmental
Centers).
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Maximize the federal Home and
Community Based Waiver by adding all eligible recipients to increase federal
matching funds.
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Consider an arrangement for
increased flexibility through individualized budgets.
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Access federal stimulus funds to pay
one-time housing infrastructure costs and use developmental center land to
expand affordable and accessible housing.
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Update the Parental Fee Schedule to
remove the bias for out-of-home placement of children.
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Increase integrated employment
opportunities.
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Expand access to Preventative
Medical and Dental Services to save regional center general fund resources.
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Maximize Generic Resources both
locally and statewide.
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Consolidate state licensing
functions.
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Establish an interagency process to
resolve disputes concerning payer of last resort issues.
The Lanterman
Coalition consists of the
12 major stakeholders
in California's
community based
developmental services system
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Public Educational Workshops
Free presentations by
Stephen W. Dale, Esq.,
The Dale Law Firm
1670 Riviera Dr., Suite 101, Walnut Creek, CA
Register by calling (925) 280-0172
Special Needs Trust Seminar
August 15
10:00 am - 12:30 pm
November 14 10:00
am - 12:30 pm
Limited Conservatorship Seminar August 15
1:00 pm - 3:00 pmNovember 14 1:00pm - 3:00 pm
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