Advocacy works again!

It's been awhile since I posted, but we just got great news this morning, and it's of the type I always try to publicize. About two weeks ago we received a flier noting that our son's preschool was being moved to a new cite as of January 3. This flier was not very informative about why or how this change would occur, and it did not give any specific information about the new site, other than the address. Then this week, we received a letter which provided slightly more information and invited us to attend a parent meeting at the new site so we could see it and ask questions.

The new site was woefully inadequate. I will not go into all the details here, but without significant building improvements - unlikely to be completed by January 3 - the site would not have provided a sound educational experience, at least for children in special education preschool.

Luckily, all of the parents in my son's class attended, and we asked many pointed questions. Our concern, distress, and frustration were clear. At the meeting, I asked if the move was a "done deal" and was told that it was. A fellow parent and I started preparing a formal letter to challenge this transition.

However, today we got a surprise from the administration - a letter stating that because of our input at the meeting, the children would be able to complete the school year in the current site! Great news for the current situation, and a reminder that advocacy works - at least sometimes.

Advocacy on the ABLE Act - Exciting Update!

Awhile ago I posted about the Achieving a Better Life Experience Act, which would allow parents of kids with disabilities to create tax-advantaged accounts for their children's medical, housing, and other living expenses. I emailed our Representative, Pete Stark, about this bill (only the first few lines are what I wrote - the rest is from the sample email from the Fragile X Foundation). Here's what I wrote:

...As the parent of a three-year-old with fragile x syndrome, I ask that you support this bill. It will be an enormous help to us as we plan for our child's future. We opened a 529 Education account for him before he was born, but it is unlikely he will ever be able to attend college. He already shows delays of 50% or more in every area of development. In his areas of greatest delay, his age equivalent is just 12 months old. On behalf of the individuals and families impacted by Fragile X living in California, I am writing to ask you to cosponsor the Achieving a Better Life Experience Act (ABLE) of 2009 (S 493/HR 1205) led by Senators Casey (D-PA), Hatch (R-UT), Dodd (D-CT), Kennedy (D-MA), Brownback (R-KS), and Burr (R-NC) and Representatives Crenshaw (R-FL), Meek (D-FL), Kennedy (D-RI), and McMorris Rodgers (R-WA). The ABLE Act will allow individuals with disabilities to create a disability savings accounts or 'ABLE Accounts' that would accrue interest tax-free.

The account could fund a variety of essential expenses for the individual, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation. The legislation prohibits amounts held by, or paid or distributed from any ABLE accounts from being treated as income or assets when determining eligibility for benefits provide by any Federal program. Asset development is one step towards improving economic self-sufficiency, and the legislation's focus on encouraging asset development will greatly incentivize people with disabilities to live more productive lives through earning and saving resources for their future.

If you would like to cosponsor this legislation, please contact [Bryn McDonough (202-224-6324) in Senator Robert Casey's office or Dustin Krasny (202-225-2501) in Representative Ander Crenshaw's office]. Thank you for your consideration of this very important piece of legislation.

Today, I got this response:

Thank you for contacting me about HR 1205, the Achieving a Better Life Experience Act of 2009, which would create a tax-advantaged savings instrument for parents to invest in on behalf of children with disabilities, and prevent these accounts from disqualifying the child for federal entitlement.I do not normally support these kinds of tax-free savings instruments in the tax code. However, in this case, I think that if the tax code provides instruments for parents to save for the well-being and future of a child without a disability through college accounts, there should be a similar opportunity to save for the future of a child with a disability. In addition, I agree that federal programs that are intended to improve the welfare of our most vulnerable must not create a perverse incentive for family members to not save money in the child's name for future care. Upon your suggestion, and the input of other constituents on this matter, I have decided to co-sponsor this legislation.

July 22 is Fragile X Awareness Day

In honor of Fragile X Awareness Day, please ask your U.S. representative to co-sponsor House Resolution 611: Supporting the Goals and Ideals of Fragile X Awareness Day. This bill will strongly urge health professionals to learn about, test, for, and support individuals and families affected by Fragile X Syndrome. Readers of this blog probably don't need a reminder about how important this is. But for anyone happening upon our blog for the first time today, some quick notes. Fragile X Syndrome is the most common genetic cause of intellectual disability. About 1 in 3600 males and 1 in 4000 females are affected. So it is rare, but not that rare. Our son has a classic textbook case, yet we were told my numerous specialists that he was "fine/would grow out of it" and "showed no evidence of having a syndrome". After a stressful year involving expensive doctor visits, an MRI, a chromosomal analysis, metabolic function tests, and other evaluations, my son took a relatively simple $300 blood test that showed he had Fragile X Syndrome. Given how well his symptoms match the disorder, it is sad and surprising that it took so long to get a diagnosis. House Resolution 611 is a step in the right direction. Awareness is very much needed. Click here to take action. It takes just a minute.

All of the budget cuts were passed today

Sorry to be taking up a lot of space on LSFX with California budget stuff, but here is the latest sad update in the saga, as presented in a message by the president of the Arc California (http://www.arccalifornia.org)

As a parent, I must take strong exception to our elected legislators' decision today to ignore the will of the people of the State of California by decimating the Lanterman Act. We must let them know that this will not be forgotten when we next go to the polls.

The 10 members of the Legislature's budget conference committee late today (Monday) caved in without discussion to Governor Schwarzenegger's devastatingly destructive cuts in the support system for people with developmental disabilities and their families.

The six Democrats and four Republican legislators voted 10-0 to accept all of the cuts recommended by Schwarzenegger's Department of Developmental Services.

Virtually every Californian with a developmental disability will be hurt. For thousands of people, this very likely will mean the end of the Lanterman Act's promise of the most appropriate supports for people with DD. Some children who are at a very high risk for disabilities will end up with permanent disabilities even though preventable through early intervention.

We're working on a summary of these cuts. Please check www.ArcCalifornia.com soon.

This catastrophe wasn't necessary. The Arc and other community groups relentlessly presented alternatives that would have saved the state just as much money without these terrible results. In the end, Governor Schwarzenegger and these 10 legislators ignored us.

Our community must respond promptly and strongly. Please call Governor Schwarzenegger and the 10 legislators immediately and express your strong disappointment, even outrage if that's what you feel. Their numbers are at the bottom of this Action Alert.

We are especially disappointed in those we've always seen as our friends, beginning with Governor Schwarzenegger, a supporter of the Special Olympics and the son-in-law of disability champion Eunice Kennedy Shriver. His Department of Developmental Services proposed more cuts than necessary to meet the dollar goals Governor Schwarzenegger ordered them to meet, and they brushed off too many of our alternatives. Intentionally or not, the department misled the 10 legislators into believing that the community "stakeholders" supported these cuts.

And the legislators allowed themselves to be misled. Our groups' professional advocates in Sacramento clearly and repeatedly, as recently as this morning, let the legislators' staff members know that these cuts were the Schwarzenegger administration's proposals, not ours, and that we have concrete alternatives. Hundreds of people testified at three separate hearings with some of these 10 legislators present. Thousands called, emailed and faxed letters to all 10 of them.

The 10 legislators also accepted the department's dismissal of our alternatives without even giving us a chance to respond.

For us, the cruelest betrayal was by legislators who have been our friends, who have visited our service programs, spoken at our conferences and meetings,supported some of our bills in the past, listened respectfully to our testimony, and even spoken about how Governor Schwarzenegger's proposed cuts were too much.

Assemblywoman Noreen Evans, the committee chair, had said all the harmful cuts that Governor Schwarzenegger proposed should at least be temporary, yet she ignored our repeated urgent appeals to make any cuts in the DD support system temporary. We had let Ms. Evans know that the department was flatly wrong when it said or implied that the "stakeholder" groups supported some of the cuts, yet today she said that they were "developed by the stakeholder groups."

Senator Mark Leno had told an earlier public hearing that the amount Governor Schwarzenegger proposed to cut was too much, yet today he voted for it. He had seriously questioned the department's proposals to shift much of the decision-making power over the IPPs from the IPP teams to the regional centers, yet today he didn't say a word as the committee adopted them.

Assemblyman Robert Blumenfield, Assemblyman Kevin de Leon, Senator Denise Ducheny, and Senator Alan Lowenthal, all people we have considered our good friends, were silent -- and all voted for the cuts.

Senator Robert Dutton, Senator Mimi Walters, Assemblyman Jim Nielsen, and Assemblyman Roger Nielloalso all went along with all the cuts.

Please call them all and tell them what you think of their votes today.

• Don't be shy. Our community's future rests on politicians learning that attacking our vulnerable people has consequences. Speak your mind, even if your voice shakes.
• Don't be deterred if they have represented you well in the past. They didn't represent you today.
• Don't be bothered if you know and like them. This isn't personal, it's about what's right for people with DD and their families. Friends tell friends when they feel betrayed.

Depending on how much well-deserved criticism they receive in the next few days, there may be some chance to reverse some of the worst cuts, or at least make them temporary. Without a community response, there's no chance, and little chance our community will be able to stand up to more assaults in the future.

The department's next "stakeholder" meeting on the bill language is tomorrow. We and the other groups will be there fighting for our community. It's time once again for you to speak out and hold your representatives accountable.

Please phone all 11 if you're able. Calls have more impact. The email addresses are for people who can't call. The fax numbers are for faxing letters on your group's letterhead.

If you live in the district represented by any of the 10 legislators, start by giving them your name and address so they know you're their constituent. If you're a member of the same party as theirs, say so. Resist any temptation to lie; they can check easily.

All of their phone numbers are in the 916 area code.

• Governor Arnold Schwarzenegger, 445-2841, 558-3160 (fax), email using the web form atwww.ArcCalifornia.org, "Write Your Legislators."
• Assemblywoman Noreen Evans, 319-2007, 319-2107 (fax), assemblymember.evans@assembly.ca.gov
• Senator Denise Ducheny, 651-4040, 327-3522 (fax), senator.ducheny@sen.ca.gov
• Senator Robert Dutton, 651-4031, 327-2272 (fax), senator.dutton@sen.ca.gov
• Senator Mark Leno, 651-4003, 445-4722 (fax), senator.leno@sen.ca.gov
• Senator Alan Lowenthal, 651-4027, 327-9113 (fax), senator.lowenthal@sen.ca.gov
• Senator Mimi Walters, 651-4033, 445-9754 (fax), senator.walters@sen.ca.gov
• Assemblyman Roger Niello, 916-319-2005, 319-2105 (fax), assemblymember.niello@assembly.ca.gov
• Assemblyman Kevin de Leon, 319-2045, 319-2145 (fax), assemblymember.deleon@assembly.ca.gov
• Assemblyman Bob Blumenfield, 319-2040, 319-2140 (fax), assemblymember.blumenfield@assembly.ca.gov
• Assemblyman Jim Nielsen, 319-2002, 319-2102 (fax), assemblymember.nielsen@assembly.ca.gov

Please call all 11 of them now. And please forward this Action Alert far and wide.

Dwight Stratton

President

The Arc of California

It's not too late to take action to stop more cuts in services to people with developmental disabilities in California

From a letter by Greg DeGiere of the ARC California:

Dear Friends:

The Department of Developmental Services on Friday gave the Legislature new recommendations that we view as the end of the Lanterman Act's promise to choose the most appropriate support for each person with a developmental disability and their family.

The Legislature's budget conference committee will consider the department's harmful recommendations today (Monday), probably in the afternoon. As of now, it looks like they will adopt them.

All 10 committee members need to know that you are watching.

Please call now -- it's too late for letters or emails. If you're calling your own state senator of assemblymember and have talked to anyone in his or her office before, call that staff person again now. Otherwise, call and talk to any staff person you can get on the phone. Ask them:

Don't cut any more services for people with development disabilities! The Department of Developmental Services' "trailer bill language" (that's the jargon term to use) would have the effect of ending the promise of the Lanterman Act for thousands of Californians.

Instead, take a few more days and actually consider community alternatives from The Arc and other groups.

If you are calling your own state senator or assemblymember, ask how your representative plans to vote. If the staff person doesn't know, ask them to find out, and tell them you will call back later to follow up. Get their name, and call back later on Monday morning.

Coordinated grassroots and Capitol advocacy for people with Developmental Disabilities and their families has actually won a few victories in the state budget war so far, but we will lose the biggest battle unless we can stop this disaster today.

Please call now.

Is that stark and clear enough for everyone?

Greg

Here are the budget conference committee members and the numbers to call:

Assemblywoman Noreen Evans, 916-319-2007

Senator Denise Ducheny, 916-651-4040

Assemblyman Bob Blumenfield, 818-904-3840

Senator Mark Leno, 916-651-4003

Senator Alan Lowenthal, 916-651-4027

Assemblyman Jim Nielsen, 916-319-2002

Senator Bob Duttton, 916-651-4031

Senator Mimi Walters, 916-651-4033

Assemblyman Kevin de Leon, 916-319-2045

Assemblyman Roger Niello, 916-319-2005

Action Alert: Draconian CA State Budget Cuts

It's not too late* to make your voice heard on the proposed budget cuts that will dramatically affect people with developmental disabilities and their families. Please read the information on the ARC California page and once there, scroll down for list of legislators to call or email TODAY.

* They were going to begin making decisions on Saturday; I haven't seen any updated news articles indicating that these cuts have gone through as of 8 AM Monday.

From the NFXF - Action Alert: The Achieving a Better Life Experience Act

Advocacy Action Alert-ABLE ACT-Make Calls and Send Emails Today
April 9, 2009   TO: All NFXF Friends and Advocates  FROM:  Your NFXF Washington Team   Dear National Fragile X Foundation Advocates, ASK YOUR MEMBER TO SIGN ONTO THE ABLE ACT OF 2009   The Achieving a Better Life Experience Act (ABLE) of 2009 (S 493/HR 1205) was introduced last week in both the Senate and House.  The ABLE Act will give individuals with disabilities and their families the ability to save for their child's future just like every other American family, and help people with disabilities live full, productive lives in their communities.     The ABLE Act will allow individuals with disabilities to create a disability savings accounts or 'ABLE Accounts' that would accrue interest tax-free.  The account could fund a variety of essential expenses for the individual, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation.  The legislation prohibits amounts held by, or paid or distributed from any ABLE accounts from being treated as income or assets when determining eligibility for benefits provide by any Federal benefits program.   Asset development is one step toward improving economic self-sufficiency, and the legislation's focus on encouraging asset development will greatly incentivize people with disabilities to live more productive lives through earning and saving resources for their future.   ACTION REQUIRED:   1) If your Representative and/or Senators have not already cosponsored  S. 493/H.R. 1205, (see list of current co-sponsors at right) please CALL and/orEMAIL them and ask them to cosponsor this important legislation. [The CALL link above will open a window for you to enter your zip and be directed to your Member's web page with phone number. The EMAIL link above will direct you to a preselected letter you can customize and email]   If you choose to call (this will have the greatest impact) we've prepared a simple SCRIPT that you can follow.      2)  If your Member of Congress or Senator has already cosponsored S. 493/H.R.1205, (see list to right) please send them a brief email or letter thanking them for their support of this important legislation. THANK YOU [All you need to do is click on the THANK YOU link above and enter your zip code and the system will select the correct letter-the please cosponsor or the thank you letter] Forward this to friends and family-everyone can participate.    THANKS!    Your NFXF Washington Team	House Cosponsors Rep Crenshaw,FL-4  Rep Akin, [MO-2] Rep Andrews, NJ-1 Rep Bachus, AL-6 Rep Bean, IL-8 Rep Berkley, NV-1 Rep Blackburn, TN-7 Rep Blunt, MO-7 Rep Boozman, AR-3 Rep Bordallo, GU Rep Brady, TX-8 Rep Brown, FL-3 Rep Brown Waite, FL-5 Rep Burton, IN-5 Rep Campbell,CA-48 Rep Cantor, VA-7 Rep Carson, IN-7 Rep Cohen, TN-9 Rep Davis, KY-4 Rep Diaz-Balart FL-21 Rep Dreier, CA-26 Rep Ehlers, MI-3 Rep Filner, CA-51 Rep Frank, MA-4 Rep Gordon, TN-6 Rep Graves, MO-6 Rep Hare, IL-17 Rep Harper, MS-3 Rep Heller, NV-2 Rep Holden, PA-17 Rep Holt, NJ-12 Rep Kennedy, RI-1 Rep King, NY-3 Rep Kirk, IL-10 Rep Mack, FL-14 Rep Marshall, GA-8 Rep McMorris WA-5 Rep Meek, FL-17 Rep Mica, FL-7 Rep Moore, KS-3 Rep Moran, VA-8 Rep Neugebauer, TX-19 Rep Norton, DC Rep Nunes, CA-21 Rep Olson, TX-22 Rep Paul, TX-14 Rep Paulsen, MN-3 Rep Pence, IN-6 Rep Platts, PA-19 Rep Roe, TN-1 Rep Rooney, FL-16 Rep Ros-Lehtinen, FL-18 Rep Roskam, IL-6 Rep Rothman, NJ-9 Rep Ryan, OH-17 Rep Schmidt, OH-2 Rep Sessions TX-32 Rep Smith, NJ-4 Rep TauscherCA-10 Rep Thompson,CA-1 Rep Wolf, VA-10 Rep Young, FL-10 Senate  Cosponsors Sen Casey,  [PA] Sen Brownback, [KS] Sen Burr,  [NC]  Sen Dodd, [CT] Sen Hatch, [UT]  Sen Kennedy MA Sen Specter PA  Sen Wicker, MS