Valerie’s Week in Review-Sunday, February 12, 2017

February 12, 2017

Dear Governor Brown,

Thank you for your State of the State address. I’m sorry to be a couple of weeks late, but I’ve been distracted by national events. I’m sure you can understand.

It was a wonderful speech, clear-eyed about the the current state of our country and the need for engagement, but full of heart. Thank you for speaking the truth, and thank you for your commitment to immigrants, to the environment, and to health care.

A year ago I was writing to you every week about my daughter Valerie, trying to help you understand the desperate need for increased funding for developmental services. As you know, the organized efforts of families, advocates, and providers made an impact on our California legislators, and ABX2-1 was passed. It didn’t provide all that was needed, but it was a great start. It was a bipartisan effort, and a good lesson for me in the ability of each one of us, especially when we act together, to affect change.

Now we are in even more challenging times. I am so grateful for the knowledge I gained advocating for my daughter here in California and I am committed to being just as active now on the Federal level. I have been making phone calls and writing emails, making donations, and re-educating myself about the workings of the US government. Valerie and I proudly marched in the San Francisco Women’s March. Of course, I have been and will be advocating to my US representatives not only about disability issues, but also civil rights, immigration, climate change, women’s rights, health care, LBGTQ rights, cabinet members, NSC members, …where do I stop?
We are so lucky to live in California, where we do not trade in hatred.

California needs to stick together and I thank you for standing strong for its citizens. I ask that you don’t forget Valerie and the other more than 295,00 Californians with developmental disabilities. Please stay strong for them if Federal funds are cut to the Medicare, MediCal, and IHSS programs they depend on, and if CMS funding through Regional Centers is decreased or replaced by block grants.

Thank you again, for your commitment to truth, to civility and to perseverance.

Sincerely,

Audrey deChadenedes

Valerie’s Week in Review – Tuesday, March 29, 2016

Dear Governor Brown,

This is a belated thank you note for the passage of ABX2-1.
I know that your office was active in negotiations leading to the vote, and after complaining to you for more than a year it seems only fair to express my appreciation when you get it right.

This bill is a much-needed first step in repairing our severely damaged developmental disabilities service system. I know that you know how dire the situation is.

There is so much more to be done, and so much more funding needed.

We need to heal the Regional Centers so families have access to the services they need, and case management to help them coordinate a bewildering system. Regional Centers need to be able to pay case managers a reasonable wage and bring caseloads down to levels that won’t threaten Federal funding.

We need to ensure that Community Based Services are aligned with CMS guidelines.

We need Community Based Services for people coming out of Developmental Centers, and we also need them brought back to life for the people already living in the community.

We need to bring the service providers who have been hanging on by a thread back to health. We need to ensure that every adult with developmental disabilities has an appropriate day program and safe and reliable transportation to and from.

We have a long way to go.

Thank you, Governor Brown, for a great beginning. Please don’t stop now.

Sincerely,

Audrey deChadenedes

A Message from ARCA – Wednesday, Feb. 18, 2016

There is hope – please read this from ARCA – the Association of Regional Center Agencies – and please make two quick phone calls!

“Our system’s funding fight is nearly over! Help us NOW!

We support the funding agreement!
Will you?

In the past weeks, ARCA and the other members of the Lanterman Coalition have been working hard with Governor Brown’s Administration to restore our system. We’re thrilled to announce an agreement add over $400 million a year to serving people with developmental disabilities! But first, the Legislature has to vote on it.

We need you to call your legislators NOW and ask them to “support the Managed Care Organization and developmental services funding package.”

This proposal stabilizes our system with a funding increase, and sets the stage for reform with a study of the rates that have hurt our service providers and regional centers for years.

We fully support this agreement, which does the following:

A 7.5% increase for salaries and benefits, for both service providers (POS) & regional centers (OPS)
A 2.5% increase for administrative and other costs, for both POS & OPS
A restoration of the supported employment rates to 2006 levels
A 5% increase for supported and independent living services
A 5% increase for in-home and out-of-home respite services
A 5% increase for transportation services
An effective 5% increase for Intermediate Care Facilities, via a 3.75% increase and elimination of prior cuts,
The creation of competitive integrated employment programs, in the form of paid internships and incentive payments for helping individuals obtain and retain employment
An increase in vendor audit thresholds
A rate study plan
Funding for bilingual staff at regional centers, cultural competency training, and parent education efforts

The developmental disabilities services system has a long history. It is built on a promise to recognize the rights of people with developmental disabilities, and to serve them in the community. Years of underfunding have seriously hurt that promise. But now we have good reason to hope!

Call your representatives NOW, and ask them to support the Managed Care Organization and developmental services funding package. If they do, we can finally, after years of struggle, begin to #KeepThePromise.

What you need to do:

Find your legislators: findyourrep.legislature.ca.gov

When someone answers the phone, say:

“My name is [FULL NAME], and I am a constituent of the member. Please ask them to support the Managed Care Organization and developmental services funding package. Thank you!”

Also share with them what your services and supports mean to you.
Share this with everyone you know.

What you can say to your legislators

Talking points:

The developmental services system was created by Frank Lanterman, a Republican from Pasadena, and signed into law by Governor Ronald Reagan, nearly 50 years ago.
Without the legislator’s support of this package, the harm will be personal, hurting [you, your family member, etc.].

The Lanterman Act has been critical in helping people live in the community, instead of state-run developmental centers.

This funding package will help save small businesses in our community that are on the brink of closing their doors because of chronic underfunding by the State.

Without this funding package, even more service providers will close, depriving more people with developmental disabilities of the services and supports they need to live independent lives in the community.”

Valerie’s Week in Review – Wednesday, December 9, 2015

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Dear Governor Brown,

It was disturbing to read your office’s press release about the state christmas tree and the “900 hand-crafted ornaments made by children and adults with developmental disabilities who receive services and support from the state’s development centers and 21 nonprofit regional centers.”

In reality, these are people you have turned your back on. These are services desperately struggling to survive decades of cuts that you refuse to to restore, even though California has ample funds. These are the regional centers whose woefully overloaded case managers haven’t received a raise in almost 20 years. This is a system you have shown no care or respect for.

In response to your unbelievable hypocrisy, some other parents and I decided to design and hand-craft our own ornaments for the state tree, ornaments that more accurately reflect the attitude you’ve displayed towards the the developmental disability community.

Here’s what we’ve come up with so far:

 

I know we’re too late for this year’s tree, but I’ll drop them off at your mailroom next time I’m in Sacramento. Maybe a Christmas miracle will happen and you’ll change your mind.

Have a happy holiday.

 

Sincerely,

Audrey deChadenedes

 

 

Valerie’s Week in Review – Tuesday, Nov. 3, 2015

Dear Governor Brown,

I took a few weeks off from writing to you about the developmental services budget; I hope you understand. I was exhausted and downhearted after the legislature’s failure to come up with any remedy at all, after all those hearings and special hearings, after all the talk from both parties promising they wouldn’t let us down.

Well, they did. They followed your lead and turned their backs on the 280,000 Californians with developmental disabilities.

It breaks my heart to know that you and all those legislators listened to the facts, the history, the personal stories – really seemed to understand the enormity of the problem – and still did nothing.

Before your May revise, committees from both houses came up with reasonable plans to provide restoration of funding to this seriously damaged system. But you convinced them to take developmental services out of the budget and into special sessions instead, where all efforts to find additional money were met with the Republicans’ refusal to raise taxes. You knew this would happen, didn’t you?

While I can in no way justify the Republicans’ no-tax stance, they are not wrong to say that there’s enough money in the General Fund to support a 10% restoration of funding. We all know that the General Fund is in great shape and that state revenues have exceeded projections by $637 million since the fiscal year began.

I truly hope that you’re writing this 10% into the 2016-17 budget that you’re working on now. The situation has only become worse this past year, with more group homes closed, more day programs out of business, more transportation companies gone, and many more just barely hanging on. Please don’t put the developmental disability community through another frightening year, as the infrastructure continues to crumble.

Please look to to your best self as you plan for the next budget year. Please remember the people here in the community whose services are literally on the brink, who need and deserve much more than 10% put back into their service system.

For now I probably won’t write every week, but I will keep writing and keeping you updated about Valerie’s life. I appreciate your attention.

Sincerely,

Audrey deChadenedes

VALERIE’S WEEK IN REVIEW
Tuesday, November 3, 2015

In the several weeks since I last reported, Valerie has been pretty healthy and fairly happy. She’s attended her regular activities – Conversation Club, City College Dance and Drama class, and outings to museums and malls and parks. But she’s lonely. She has expressed this in many ways, including the clearest way possible: saying “lonely” over and over with her communication device.

We’re working to arrange meet ups with other friends in the same self-directed day program, but what she really misses is the busy, active, very social home base that exists at her old big day program. A partial solution has her dropping in to say hi every couple of weeks. They’re happy to see her and she feels connected again for a while.

What she misses is community.

Just in case there was another possibility, I checked in again recently with Val’s Regional Center social worker. I knew there were no appropriate day programs for Val in San Francisco, but I wondered if there might be something in Marin or San Mateo county.

The answer, which didn’t surprise me, was no, because:

1. There were only a tiny few programs appropriate for Valerie in the first place and some have closed.
2. None of those existing have openings; some aren’t even taking any more waitlist names.
3. Even if they did, there’s no transportation available to go inter-county.

So I’m back to brainstorming, and Val soldiers on.

There has been, as always, plenty happening in Valerie-land, the usual assortment of eligibility renewal forms and doctor visits and prescription and supply refills.

In the last month, forms arrived from three different apartment waiting lists, to be filled out and returned as confirmation of her wish to remain on these lists. She’s been on them for six years, and there are no prospects in sight. In truth, I’m really enjoying her living here and I think she is too, but she needs a life that will go on when I’m gone. I’m strong and healthy, but I’m 66, so that could change in a minute. I need to set up a life for her while I can still be around to help it run the way she wants and needs it to.

Will there be housing for her? Will there be a day program that can run without me? Will she have Supported Living Services? And most of all, will there be people who value and love her?

As great direct-service people quit to make a living wage, as programs close, as things fall apart all around us, I am terrified for my daughter’s future.

Valerie’s Week in Review – Monday, Sept. 14, 2015

Dear Governor Brown,

Although you may not be directly at fault in the legislature’s failure to pass SBX2-14 last week, I hold you responsible.

The Republicans say that developmental services should have been funded in the budget, and they’re right. They still should have voted for Senator Hernandez’s bill; the MCO tax still needs to be restructured, and having them look backwards and point fingers doesn’t help the developmental service system now.

We don’t need a tax though, to provide the desperately needed 10%. The money is there. The General Fund is healthy and state tax revenue for this fiscal year – just two months – is now $637.8 million above what was originally projected.

I’m angry and profoundly sad that both Democrats and Republicans are more concerned with their parties’ philosophies than about the welfare of California’s 290,000 citizens with developmental disabilities.

I’m grateful to Senator Hernandez for SBX2-14, and to the many Democrats who supported it, but it wasn’t enough. At this point there needs to be a bipartisan solution. We wouldn’t be here if you had put the 10% restoration of funds into the budget.

I appreciate that special sessions will continue and I look forward to a better outcome. In the meantime, the developmental service system continues to crumble, programs continue to close, and people continue to lose services, as California’s leadership continues to fail its most vulnerable population.

Sincerely,

Audrey deChadenedes

Valerie’s Week in Review – Saturday, September 5, 2015

Dear Governor Brown,

Valerie and I were in Sacramento for the Speak for Justice rally on Thursday, September 3rd, along with more than 1,000 others. Did you see us? I know that people have sent you messages and photos and beautiful, powerful videos from that day. I hope you’ve given them the attention they deserve.

There were other rallies during the week, in San Diego, Santa Barbara, and Los Angeles. Hundreds more came out to speak up for their rights, for their needs, for fair and legal treatment. Did you notice? Did you care?

I hope you were moved, and I hope that you understand the moral imperative to restore funding to the developmental service system and to provide relief to people who are losing the supports that allow them to live meaningful lives in their communities.

If, somehow, you don’t see the ethics of the situation, I’m sure you understand the legalities. As you certainly know, the Lanterman Act says “the state of California accepts a responsibility for persons with developmental disabilities and an obligation to them which it must discharge.”

This responsibility is not being met, in fact California is also falling short regarding the ADA and the Olmstead decision.

How can you turn your back? Do you think we’ll just go away? We won’t. The developmental disability community is angry, frightened, and desperate. We are running out of options and the only thing we can do is keep fighting.

With the Lanterman Act, California made a promise to people with developmental disabilities. Please don’t let your legacy be the destruction of this important piece of legislation. Please, Governor Brown, keep the promise.

Sincerely,

Audrey deChadenedes

VALERIE’S WEEK IN REVIEW
Saturday, September 5, 2015

Valerie had a good week, with both her energy and her mood on the rise.

The main event was the rally in Sacramento on Thursday. We did our now familiar prep and packing the night before and were on our way earlier than either of us usually even opens our eyes. We picked up a couple of friends on the way to the bridge and headed East.

Everyone gathered first at the Crest Theater for a program of inspiring speakers and videos, then we all marched to the Capitol for the rally. I loved seeing the theater full to capacity, the lobby overflowing, people who had traveled from all over California, people with developmental disabilities, family members, service providers, and advocates. I was told that there were 1,500 people in attendance.

There were some amazing speakers at the theater, among them Tony Coelho, who was primary sponsor of the Americans with Disabilities Act. My favorite feature was a video from labor leader and civil rights activist Dolores Huerta. Ms. Huerta emphasized that disability rights are civil rights. People with disabilities “deserve to have full lives – not only of happiness but also of opportunity. This is a civil rights issue and we must demand that we get the financial resources that we need for people with developmental disabilities.”

After the program everyone marched to the Capitol, carrying signs and chanting, on foot, in wheelchairs, and walkers . The crowd assembled at the Capitol steps for more speakers, including members of the legislature and members of our community.

Valerie watched and listened and chimed in using her communication device.

Before heading home, Val and I stopped in at the Capitol and left some mail for the Governor and some of our legislators.

Back in our everyday world, Valerie’s feeding supplies needed my attention. I spent time on the phone every day trying to get her regular monthly delivery, due last week, before we ran out of crucial items. She’s received the same inventory from the same company for more than 10 years, but somehow this month communication between that company and her doctor’s office became hopelessly confused and took a while to untangle. I’ll skip the details here since it will only give readers the same headache I had, but I will say that we finally received delivery on Friday, truly in the nick of time, and I only need to make a few more follow-up calls next week.

On Friday evening Val and I attended a monthly jazz concert for people with neurological differences. She enjoys this event enormously and her friend Joe usually comes along. Unfortunately, his staffing problems continued from last week – his Supported Living provider is experiencing a severe personnel shortage – and he couldn’t  join us. We sent him a little phone video to keep him included and we sat back and enjoyed the wondrous music. It was a long week, but a good one.

Valerie’s Week in Review – Friday, August 28, 2015

Dear Governor Brown,

This coming Thursday, September 3rd, the Lanterman Coalition is sponsoring a rally in Sacramento to remind the Legislature that now is the time to heal our system and restore the promise of the Lanterman Act. Valerie and I will be there to gather with other advocates, family members and people with development disabilities.

Please pay attention, Governor Brown.

Please hear our voices.

Please take us seriously.

Please understand that we are in a crisis.

Valerie and I will stop at your mailroom while we’re at the Capitol, and leave you some more words and pictures. I hope you’ll take the time to consider us and the other 280,000 Californians with developmental disabilities, and take action to fix this situation now.

Thank you.

Sincerely,

Audrey deChadenedes

VALERIE’S WEEK IN REVIEW
Friday, August 28, 2015

As Valerie’s seizure activity and low energy continued, I put aside last week’s goal of sticking to her regular schedule and adjusted our plans for her comfort. I decided that, at least for a few days, we might as well take advantage of the flexibility we have now that we’re not tied to an outside day program. With her other staff still out of town there were no hours but my own to rearrange and it was relatively easy to make this shift.

Mostly, she slept late and eased into her days very gradually. She was able to attend and participate in her late afternoon and evening activities, but not much more than that.

Thank goodness, the extra sleep and minimal demands had a restorative effect. By the end of the week Val was beginning to feel better, and we started easing her back into daytime life. It will still take a while for her body to fully adjust to her higher medication dose, and we may not have seen the end of her seizures, but this is a nice place to rest.

As we reached the weekend, Valerie looked forward to her regular Saturday visit with her best friend. Unfortunately, her friend’s Supported Living Program recently lost some critical staff members, resulting in a few details falling through the cracks, including the scheduling of transportation and support staff. No visit this week, much to Val’s disappointment… Sadly, this was not the first time a visit had to be cancelled due to staffing issues and it probably won’t be the last.

We used the time to plan for the week ahead, to brainstorm new activities as the season changes, and strategize for our Thursday trip to Sacramento. All hands will be back on deck, and not a minute too soon.

Valerie’s Week in Review – Friday, August 21, 2015

Dear Governor Brown,

Once again, I’ve missed a week of writing and I apologize. Like so many people my age, I have an elderly mother in another state with health issues and I had to be there. Unfortunately, having a child with disabilities doesn’t exempt us from the more typical human situations.

I was also unable to attend the Second Extraordinary Session hearings, but I did watch them on my computer. I tried to understand the intricacies of the MCO tax, and I hope that the Senators on that committee were able to decipher this very complex issue. It’s not clear to me whether any funds from this tax can go into the developmental service system, but at least they will offset other demands from the state’s wallet.

The information presented at the Assembly hearing was more familiar to me. And more frustrating, in many ways, to hear the same statistics quoted yet again, to hear more and more heartbreaking stories of program closures, long waiting lists, and people with developmental disabilities staying home waiting for services. It might be just as well that I was watching in privacy instead of at the hearings because I just sat there crying most of the time, as feelings of helplessness overcame me.

Assembly Member Chad Mayes, new to this discussion, asked “Why wasn’t this addressed in the normal budgetary process?” and nobody really gave him a clear answer. Several people in panels and public commentary talked around the question, citing “philosophical differences” between Democrats and Republicans and your reluctance to use existing funds, but nobody gave a direct or comprehensive answer.

Assembly Member Susan Bonilla asked “When do we declare an emergency? How can we create a trigger to pull down rainy day dollars?” There was also no clear answer.

Every single bit of testimony spoke to the urgent need for funding to keep programs open, the looming threat of losing billions of Federal dollars, and the immeasurable cost to consumers in loss of care, community, dignity, and choice.

I wonder why, as our leader, as the man I and all the parents I know voted for, you don’t speak to us, your constituents, about this situation. So many of us have contacted you so many times, and I believe the urgency and enormity of the challenges facing our community must be clear to you. You’ve issued statements addressing climate change, transportation, and many other things, but I have not heard one word from you addressing your constituents with developmental disabilities and their families. I don’t think this is too much to ask.

Sincerely,

Audrey deChadenedes

 

VALERIE’S WEEK IN REVIEW
Friday, August 21, 2015

Valerie’s been having a challenging time, as she continues adjusting to her new medication dosage (we raised it one more time) with only a slight decrease in seizure activity. Her neurologist isn’t worried, since it takes time for the higher dose to take full effect, but the combination of more meds and continuing seizures leaves Val tired and anxious.

She’s been so sleepy in the morning that it’s difficult to get her up and out for activities or to keep her awake once she’s out. Yet at bedtime her muscles are so stiff and her mind so agitated that it’s hard for her to sleep. I massage her neck and shoulders and stretch out her arms and legs. I give her extra calcium and melatonin and play soothing nature sounds to help her relax. I consider administering additional medications, weighing the possibility of sleep (for both of us) against the certainty that it will mean even more difficulty getting and staying awake the next day. Most nights I stick with natural remedies.

We’re also handling staffing issues, as the summer comes to a close and two of our three workers want the same week off to visit family. We were able to do a bit of juggling with our remaining caregiver, but I’m still covering five days in a row around the clock.

This is a trade off for the couple of days I took to go see my mother, so I’m not complaining, but the fact is Valerie prefers being out in her world with her young caregivers. Being with her mom makes her feel like a baby and she lets me know she doesn’t much like it. I have to keep a bit of distance both physically and emotionally, and remember not to cuddle or use any pet names.

We’re trying to stick to her usual schedule even though she has trouble using her communication device with tired eyes and runs out of steam in the middle of her theater class. As the weekend approaches we agree that it will be fine to take it easy for a day or two. Maybe we’ll take a walk around the neighborhood, but our biggest plans are simply to catch up on rest and think about the week ahead. Right now that sounds like heaven.

Valerie’s Week in Review – Friday, August 7, 2015

Dear Governor Brown,

I wasn’t able to write last week; I hope you didn’t think that I forgot about you – or about the need to repair the developmental service system.

Interestingly, I did hear from you, the first time I’ve received any correspondence from your office since I began sending you weekly letters in April. I was a little confused about why you sent me a message about climate change, since I’ve only written to you about one issue – DD funding – but I suppose I should be grateful to be included on your mailing list.

In another week, the special sessions will resume and our legislators will continue looking for funds to restore the cuts – more than a billion dollars since the great recession – that the developmental service system has sustained. I think the committee members truly understand the desperate need to stop the collapse of this system, and I am very hopeful that real solutions will be found.

Valerie and I plan to be in Sacramento to provide our perspective. We’ll be sure to stop by and stay hello.

Sincerely,

Audrey deChadenedes

VALERIE’S WEEK IN REVIEW
Friday, August 7, 2015

Valerie has been having seizures, despite being on two different seizure medications. There have been several worrisome episodes recently, and we were finally able to have an appointment with her neurologist last week. The outcome of our consultation was an increase in one of her medications, and now we’re dealing with the extra sleepiness and confusion that invariably follow raising dosages. The expectation is that these side effects will diminish over the next few weeks, but for now Val’s daily schedule has to be adjusted around her dramatic lack of energy.

Since it’s impossible to predict how this will look on a day-to-day basis, we keep our options as open as possible and all plans must be flexible. Some days Val can’t be awakened until two or three hours after her normal time; other days she runs out of steam and needs a nap after just a few hours of light activity.

Actually, we have it pretty easy. Seizures are common in Rett Syndrome, Valerie’s disability, and they are often difficult to control.

Rett syndrome, often misdiagnosed as autism, cerebral palsy, or non-specific developmental delay, is a unique postnatal neurological disorder that is first recognized in infancy and seen almost always in girls.

Rett syndrome is caused by mutations on the X chromosome, on a gene called MECP2. It occurs worldwide in 1 of every 10,000 female births.

Rett syndrome causes problems in brain function that are responsible for cognitive, sensory, emotional, motor, and autonomic function. These can include learning, speech, mood, movement, breathing, cardiac function, and even chewing, swallowing, and digestion.

There have been amazing scientific advances since Valerie was born; at that time there was no test, and we didn’t have a definite diagnosis until Val was in her teens. Today, we have genetic testing, clinical trials on promising drugs, and ongoing research all over the world.

Please visit http://www.rettsyndrome.org to learn more about this disorder and the enormous amount of help available for families facing life with Rett Syndrome.

Rett syndrome presents many challenges, but with love, therapy, and assistance, those with the syndrome can benefit from school and community activities well into middle age and beyond. They experience a full range of emotions and show their engaging personalities as they take part in social, educational, and recreational activities at home and in the community.