Valerie’s Week in Review – Friday, July 24, 2015

Dear Governor Brown,

Even though the legislature in Sacramento is on a break, it seems important to keep reminding you of the enormous need to restore funds to the state developmental service system.

There is no break for parents struggling to find placements for their adult children as services disappear. Programs continue to close, to limit their services and the numbers of clients they can accept; buses stop coming; parents keep aging.

Please don’t forget we’re here. Over 70% of adults with developmental disabilities live with their parents, and we will not live forever. We try and try to find programs to serve our children, to step in for us when we pass, but there is nothing. I have spent the last 30 years caring for my daughter and at least 6 of those years trying to construct a system of support that will keep her safe and happy after I’m gone. Some pieces still haven’t come together, and everything I’ve managed to put in place has come apart. Our current situation can only work with me as supervisor, head caregiver, and de facto case manager. What will happen to her when I’m gone?

While both state and federal laws mandate community-based services for the 280,000 Californians with developmental disabilities, our state has some of the lowest Fiscal Effort statistics and some of the highest caseload ratios in the country. Recent studies show us at 37th in the country in per capita DD spending. Regional Center caseloads, mandated to be 1:66, are now averaging 1:89. Not only does this leave clients and families without support, but California is at risk of being sanctioned by the federal government and losing billions in matching funding.

Disability is part of life, and people with developmental disabilities should be part of their communities. It benefits everyone to recognize and value differing abilities. But without services, how can this happen?

Please don’t desert this population, these citizens who deserve so much more. Please reinvest in the developmental service system and keep California’s promise.

Thank you.

Sincerely,

Audrey deChadenedes

VALERIE’S WEEK IN REVIEW
FRIDAY, JULY 24, 2015

It was another busy week for Valerie, and for me. In preparation for her Conversation Club, we spent hours trying to program her communication device to include the topic for the week. It would have been a simple matter to download content from the internet, but current CMS rules prohibit devices they’ve funded from having internet access. This means more work for us.

Worse, this rule means that adults with communication devices are not able to email, message, or Skype with their doctors, social workers, pharmacies, or caregivers, not to mention family and friends.

The good news is that the Steve Gleason Act will correct this wrong, by eliminating the “capped rental” which requires devices to be rented for consumers for 13 months before they can own them, and by allowing users to pay a fee to unlock their devices’ internet capabilities. As of July 22nd, the House and Senate passed the act and it now awaits President Obama’s signature.

Later in the week Valerie went to a party at the day program she’s attended for the last 3 years, which will be closing next week. She loved seeing her old friends and caregivers, though the closure is anything but happy.

I went along and had a chance to visit with staff. I was really sorry to hear that the other options originally offered to the clients losing this program had fallen through, and that most of them will now just stay at home with their parents.

A few families had asked their Regional Center case managers about the Self-Directed Program that Val is using, but only a very few of those workers knew about this program. (Woefully low pay = high turnover = uninformed caseworkers.) The parents who were able to get the information decided it would be too much work.

I can understand that. This week I’ve spent 10-plus (unpaid) hours working on payroll, training staff, finding more activities (City College is on a 3 week break) and trying to decipher the incredibly complicated billing and reimbursement system through the Regional Center.

But keeping Valerie at home is not an option. She needs stimulation, interaction, inclusion. So does everyone else. So I do the work; I’m not complaining but, as I’ve noted before, not everyone can manage it and I can’t pretend it’s easy or fun.

Our children need day programs! I repeat what I wrote to the Governor: Disability is part of life, and people with developmental disabilities should be part of their communities.

Where are their services?

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Valerie’s Week in Review – Friday, July 17, 2015

Dear Governor Brown,

It’s been almost a month since assistance for developmental services was taken out of the budget and moved to the Special Sessions, and still no decisions have been made. Meanwhile, the situation gets worse by the day as the system continues to collapse.

I appreciate that the committee members seem to understand the urgency of the need and that, with the help of your financial analysts, they’re looking for taxation funds to rescue our system when the sessions resume in August.

But why do we even have to look for the money? Your Department of Finance reports that General Fund cash is running far above the 2015-16 Budget Act forecast ($815 million extra for June, $713 million extra this fiscal year-to-date). This would more than amply cover the 10% restoration we so desperately need.

Why not use the General Fund? Didn’t the savings from previous Developmental Center closures go into the General Fund? I know you like having the budget balanced, but at what human cost?

This is an emergency.

I also know you like keeping plenty of money available in the Rainy Day Fund. But, Governor Brown, with services falling apart all over the state, with people with no day programs, no housing, no supported living or employment services… for those service providers forced to downsize or close their doors entirely, for individuals with developmental disabilities, this is a downpour.

Thank you

Sincerely,

Audrey deChadenedes

VALERIE’S WEEK IN REVIEW
Friday, July 17, 2015

Valerie had a busy week. I was able to find more fun, free activities for her to participate in as part of her self-directed day program, and she enjoyed herself thoroughly. The activities need to be free because the budget for this program just barely allows enough money to decently pay her direct support staff. All administration work (mine) is done on a voluntary basis.

On Monday she went to her Conversation Club, held at the Noe Valley Library and sponsored by Support for Families of Children with Disabilities. There, she and other AAC (Alternative and Augmentive Communication) users practice conversing with each other using their devices.

On Tuesday she attended Dance and Drama Class, part of the City College Disabled Students Program.

On Wednesday she visited her old day program and watched a movie. She was so happy to be among her old friends.

On Thursday she and her attendant visited the Botanical Gardens, and she was enchanted by the 12 pianos temporarily living among the trees.

On Friday we traveled to Santa Rosa for a memorial service for her paternal grandmother. We spent the night and had dinner and breakfast with family who had flown in from all over the country.

Obviously, an overnight trip is a major undertaking with all of Val’s medical needs. I’ve already written about the steps needed to prepare for a trip to Sacramento for the day; this required all of that and quite a bit more, but we took a deep breath and managed to get through it with only a little lost sleep.

Throughout the service and the following social interactions I observed, as I have many times before, how uncomfortable many people are when they encounter someone with obvious disabilities. Even Valerie’s extended family, dear people who don’t get to see her that often, weren’t quite sure how to communicate with her and tended to keep their distance after their initial greeting.

Her late Grandmother understood her, took it as a given that she was smart, and expressed her love for Valerie openly and often.

Of course we miss her terribly, and we’re sad for her difficult final days and the loss to all of a vibrant and generous soul. But beyond that, I feel a particular loneliness with one more person gone who sees beyond Valerie’s disability to who she really is: a bright, funny, strong-minded young woman. I can only begin to imagine the loneliness that Valerie must feel.

Valerie’s Week in Review – Friday, July 10, 2015

Dear Governor Brown,

Valerie and I will be in Sacramento in August to give testimony at the continuing Exceptional Hearings. For now, we’re watching the broadcasts with great interest.

This week we saw the July 9th Assembly session. I hope you’re hearing what we are, that the members of this committee are clearly seeing and understanding the tremendous and urgent need to restore funding to the developmental service system.

Please listen to them, Governor Brown. And please do it now; don’t wait for task forces that won’t have any recommendations until next year. The system is falling to pieces NOW all over the state – you know that.

I do understand that you want to be careful and know where the money will be coming from, and it’s good to keep studying that. It seems to me that there are abundant sources.

This is an emergency.

Years after years of cuts are now resulting in programs closing everywhere and people being turned away from programs that do manage to stay afloat. This is happening NOW; it has been going on for quite a while, and it will get worse.

To be clear, as several of the Assembly committee members pointed out, this is not new money into the DD system being discussed here, we are talking about giving back money that was taken away.

My daughter and the other 280,000 Californians with developmental disabilities desperately need a 10% restoration of funding to service provider rates and Regional Center Operations. We need it now.

Thank you.

Sincerely,

Audrey deChadenedes

VALERIE’S WEEK IN REVIEW
Friday, July 10, 2015

This has been a week for adjusting and settling in – to Val’s new routine, to a new caregiver – and for catching up on sleep. Even a short hospital stay can take a few weeks to recover from.

Valerie seemed depressed this week, and she let me know with her communication device that she really missed the people at her old day program. Although her portion of the program is closing, the larger entity is still in operation. We decided to see if she could go for a visit during her program week, and she spent a happy afternoon with some of her favorite people.

I have to remember that even though I was able to get the pieces in place for Val’s new program without too many obstacles, it’s a big change for her – any change is a big change for her – and we need to give her the time she needs to get comfortable with new people and new situations.

It took her a while to get used to the two wonderful women who were her attendants at the old program, and it’s no different with the new young woman we’ve hired. Valerie, like so many people with developmental disabilities, needs to really get to know someone before she trusts them. After all, they’re involved with intimate details of her care, and she is helpless without them.

I was approached this week by another parent whose adult child is being displaced from the one-to-one program. Her case manager at the Regional Center told her there were no options for her daughter other than the self-directed program, and that it was very difficult to run. She called me for some pointers on setting it up and I was happy to oblige.

When I spoke to staff at the still-existing program, I was told that the promised replacements for the programs being closed were not yet in place, and that there were some problems. Thirty clients with extreme physical needs and nowhere to go….

We continue looking for activities to interest Val so much that she’ll forget her shyness; to support her ongoing physical recovery; and to try to keep up with developments in Sacramento.

The Extraordinary Sessions of both the Senate and Assembly will continue through August, looking for revenue sources to provide some restoration of funds to the collapsing developmental service system. We plan to make at least one more trip to Sacramento to listen in and speak up. We are greatly encouraged by the remarks of the members of these committees, which seem to show a level of compassion and commitment that is sorely needed now.

But as one of the people giving testimony on July 9th said: “Thank you so much for your beautiful words. But we don’t need more words, we need action – now.”

Valerie’s Week in Review – Friday, July 3, 2015

Dear Governor Brown,

Although I wasn’t able to be in Sacramento, I did manage to watch a recording of the second Extraordinary Session on Thursday, July 2nd.

I appreciate that you have directed the committee to come up with sources of sustainable funding for developmental services, and I hope this means that you do understand the enormous and urgent need.

The committee members are taking this issue very seriously, and it seems to me that they understand quite clearly what’s at stake.

Although DDS is only one piece of the issues being looked at, my daughter Valerie, along with many others, also relies on MediCal and IHSS. My letters to you have been focused on Regional Center services, because that house is burning down now, but people with complex multiple disabilities like my daughter depend on a variety of services, each one of them critical. We’ve been limping along for years with 7% fewer IHSS hours, with difficulties finding medical and dental providers, and so I want to say that all of these efforts are appreciated. However, please don’t leave Regional Center service provider rates behind again.

Your financial analysts spoke of the pressures of complying with the new Federal regulations for Home and Community Based Services, and of closing the Developmental Centers. They spoke of raising funds through MCO taxes and through taxes on cigarettes and soft drinks.

These are not bad ideas, but I have to ask you again, as several of the Senators did:
Why isn’t the money saved by moving people from the DC’s into the community going back into developmental services? Why is it going into the General Fund? Why have the funds from the centers that already closed gone into the GF and not into the DD community? Again, a bed in a Developmental Center costs $500,000 a year; the same person living in the community with all necessary supports costs the state $75,000-300,000 annually. Shouldn’t these dollars saved stay in the system that needs them so desperately?

You have earmarked $46.7 million from the General Fund to develop new community resources for the DC population, even as you let the existing community resources fall apart. I don’t understand why you can’t see how short-sighted this is. These resources can support everyone if you invest in restoring their funding and allow programs to return to full strength.

Perhaps you think that these services can’t meet the complex needs of DC residents. In fact there are already many, many people living in the community with conditions every bit as complex – my daughter is one of them – and with behaviors just as challenging. And before funding started slipping away and services started disappearing, they were living quite successfully.

Reinvesting in existing community programs will not only improve the quality of life for those individuals with developmental disabilities already living here, but it will allow for expansion from a stable base for the clients leaving DC’s. Please direct funds for these programs to rebuild – there is no need to reinvent the wheel.

I appreciate your apparent willingness to find solutions, but please don’t cripple this system further by allowing months, years of Task Forces and Work Groups to figure out the details. We’ve already done that. We need solutions NOW.

Senator Leno said it: “The system is disintegrating now and the infrastructure is at risk of dissolving.”

Please listen to him.

Thank you.

Sincerely,

Audrey deChadenedes

VALERIE’S WEEK IN REVIEW
Friday, July 3, 2015

This week, as Valerie’s health continued to improve, we made great progress toward getting her Self-Directed Day Program running smoothly.

We were able to identify a number of engaging low- or no-cost activities for Val to participate in. We decided to increase the time she spends at her City College Theater Arts class. In recent months, her busy Day Program schedule had only allowed her to drop in to this class occasionally, but now she can spend two afternoons a week with her old friends. On her first day back, she said repeatedly, using her eye-gaze activated communication device – “I missed you”.

We’re taking advantage of the abundance of free outdoor performances that San Francisco offers during the summer, free movies at the main library, free museum days. This will be an ongoing process, and of course I’m researching classes and other possibilities for the fall, but so far, so good.

Training for our new staff person continues, a bit more slowly than I’d hoped, but I expect she will work out very well in time.  Meanwhile, my own time is not quite free as I support and monitor her.

At the end of the week Valerie and I watched the Extraordinary Session Informational Hearings on our computer and she was as interested as I was. We are very encouraged by the compassion and commitment of the committee members. Our heroes especially:

-Senator Mike McGuire, who asked some hard questions about the reality of the time frames being looked at.
-Senator Holly Mitchell, who spoke of her frustration with endless task forces that went nowhere and asked why the DC closure money can’t go into the developmental service system.
-Senator William Monning, who pointed out the huge savings to the state of moving people out of the Developmental Centers
-Senator Richard Pan, who brought up the issue of access to MediCal and quality of services, and who made the important point that for this population “services are all interlinked, and the same people are getting hit by budget cuts multiple times”
-Senator Mark Leno, of course, who has been our champion for years. He said, “We will have failed in our mission in this committee if we close without having raised some respectful restoration of funding to this system”

Amen to that, and my most sincere thanks to all of these hard-working legislators.