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.

Valerie’s Week in Review – Friday, June 26, 2015

Dear Governor Brown,

I shouldn’t be surprised, but I had really hoped you would relent. Instead, there’s nothing in the budget you signed this week for developmental services. Tens of thousands of people called and wrote to you begging for help but you turned your back on us.

You are certainly aware of the crumbling system of services for individuals with developmental disabilities in California. You know about the program closures, the erosion of quality in programs still managing – barely – to survive. You know about problems with staff retention, with even finding decent staff in the first place. You know that 20 plus years of cuts that you have failed to address have resulted in problems across the board – in Day Programs, Independent Living, Supported Living, Supported Employment, Transportation, Case Management, Quality Assurance and Housing.

You know this system is broken, you have the power to fix it but you don’t care. I don’t understand.

I hear that you don’t think the state should be responsible for the care of people with disabilities; you think it’s up to families to care for their own. Governor Brown, how are we supposed to do this? Unless we’re multi-millionaires, we don’t have the resources to cover all the complex needs our children’s conditions present. In fact, many of us have to scale back the hours we work, or even change the kind of work we do in order to have the time and flexibility to be available for our children’s needs, resulting in even less income. In addition, statistics show that families who have children with disabilities have a far higher divorce rate than average, so a large percentage of these families are run by single parents.

Even if we manage to find and maintain satisfactory supports for our children, none of us live forever. How do you suggest we ensure our children’s safe and happy lives after we’re gone?

We aging parents – and there are many of us – are terrified. You have allowed the systems we’ve worked so hard building to collapse, and you are unwilling to provide funding to repair the damage.

What will happen to our children?

I can’t help but feel that you have really let us down. I don’t understand why this makes sense to you, either from a practical or an ethical standpoint. I’ve been writing to you every week for four months now; I always check the box asking for a response and I have not heard one word back from you. I really don’t understand your reasoning. Can you explain it to me?

Sincerely,

Audrey deChadenedes

VALERIE’S WEEK IN REVIEW
Friday, June 26, 2015

Valerie is still recovering from her time in the hospital. She’s finally off oxygen, and getting out for a bit every day. She is making slow but steady progress.

This week began Valerie’s new self-directed day program. Instead of having the bus come and bring her to her outside program, there’s an attendant coming here each day to take her out for activities. I’ve miraculously been able to hire an extra person to staff this program and her training is in progress. It was actually great timing to have Val not quite at full strength for this week since we need to use the time to demonstrate and practice lifting, dressing, and feeding Val, as well as modeling how to work with her communication device.

At the end of each week, I’ll now write checks to Val’s staff, from which I will have deducted all state and Federal taxes, and every quarter I’ll file reports. I will research and locate activities for Valerie so she remains active and involved in the community, and I will maintain and monitor a system of accountability for her staff.

This is quite a bit more work for me than sending Val to an outside program, but given the current choices it’s by far the best option for her and so I’m more than willing.

But it should be noted that the state is saving money. Valerie’s previous day program was vendorized at a higher rate than parent-run programs are, resulting in a $16,000 annual cost reduction to the state. This is before we factor in transportation, which costs up to $54,000 a year. Now we’re responsible to transport Val from one place to another, so the state no longer has to cover this expense.

Because California’s legislature has allowed the developmental service budget to erode to this abysmal condition, and because my daughter’s program has closed as a result, not only is the state saving $70,000 a year, but I’m doing most of the work, without pay of course.

Is this what the Governor had in mind all along? Brilliant and evil, but flawed…because, again, I won’t live forever. What then?

Valerie’s Week in Review – Sunday, June 21, 2015

Dear Governor Brown,

I’m late writing to you and keeping this short because Valerie spent most of last week in the hospital and her well-being has occupied most of my time and attention. I did notice, though, that the final budget included none of what the developmental disability community has been asking for, none of what either the Senate or the Assembly proposed, not one penny of what is needed to stop this system from collapsing.

Thankfully, many of California’s legislators do understand this urgent need. I pray that the Extraordinary Legislative Session on Health Care will have a more positive outcome. I pray that you will let go of your cold-hearted and short-sighted viewpoint and do the right thing.

Sincerely,
Audrey deChadenedes

VALERIE’S WEEK IN REVIEW
Sunday, June 21, 2015

This would have been Valerie’s last week in her soon-to-be closed day program, but instead she spent her time at UCSF. A cold developed into pneumonia and IV antibiotics, hydration, and major respiratory therapy were called for. Since most doctors know very little about her disability and tend to misinterpret her symptoms and since she can’t speak for herself, I spend my days and nights with her whenever she’s inpatient. It was a difficult week for Val, but she stoically endured the injections and infusions and foul-smelling mists. Now she’s home and well on the road to recovery, still on oxygen and needing nebulizer treatments, but happy to be in her own bed.

It’s a short report this week, as I’m seriously behind on sleep and still needing to attend to details of Valerie’s health.

More news next time –

Valerie’s Week in Review – Friday, June 12, 2015

Dear Governor Brown,

I don’t understand. I don’t understand how you can remain unmoved by all the phone calls and emails and tweets you’ve received from families and individuals with developmental disabilities. I don’t understand how you can refuse to restore funding to the developmental service system, the system that has been destroyed by decades of budget cuts, the system that’s falling apart before our eyes.

I don’t understand how you can provide funds for community-based services for people transitioning out of Developmental Centers and none for people already living in the community, watching their services come crashing down now. Do you think the people in the community are less disabled? Less deserving? Don’t you know that they’re the same people, that if they had been born 20 years earlier they might be in a Developmental Center too?

I don’t understand why you can’t see how financially impractical it is to let the current system fall apart even as you acknowledge your responsibility to provide stable community supports for transitioning DC residents. Don’t you understand that rebuilding a destroyed system will be much more expensive than expanding a thriving one?

I don’t understand why you think that the state has no responsibility to the people with developmental disabilities now living in the community. I’m pretty sure you’ve read the Lanterman Act, which says exactly the opposite.

I don’t understand why you don’t get that the people with developmental disabilities currently living in their communities are saving California enormous amounts of money. Residents of Developmental Centers cost the state around $500,000 a year; the same people living in the community – the people here now – cost an average of $60-70,000 annually, with a high of $300,000 for those with the most intense needs.

I really don’t understand how you can justify not putting the savings from DC transitions back into the developmental service system. You plan to close Sonoma Developmental Center by 2018. Even if all 400-plus residents there are at the highest level of need in the community, this will be a savings to the state of $80 million a year. Which you want to put into the General Fund instead of the DDS budget? How is there anything right about this?

I don’t understand what you expect people to do as their day programs close, as their transportation no longer arrives, as their caregivers quit. What do you expect aging parents to do as the supports we thought were in place for our adult children come crashing down? Families take care of their children because they love them. We are willing to give up our time, our earning ability, our freedom to come and go, and in many cases our health. But we won’t live forever…What will happen to our children? Their community supports are disappearing and you don’t want to fix this broken system.

What will happen to my daughter? Valerie is 30 years old and has Rett Syndrome. She definitely would have been a candidate for a Developmental Center had she been born in an earlier time; now she happily lives with me, in the community. You could say that we’ve been saving California money all these years. That’s – at minimum – $6 million so far.

You don’t need to thank me. But please – give my daughter a day program – hers is closing in July. Give her safe and affordable housing – there is none. Give her support staff who are well-paid enough that they don’t need three jobs to survive. You have the power to fix this. Please.

Sincerely,

Audrey deChadenedes

Valerie’s Week in Review – Friday, June 5, 2015

Dear Governor Brown,

I continue to be amazed at your refusal to restore funding to the developmental disability community. I’ve been closely watching the Joint Conference Committee proceedings. Thankfully, the committee members have clearer vision than you do. Here are some of their comments:

Senator Mark Leno – This issue of the serious underfunding of developmental services is not a partisan issue. It impacts each of our districts and touches each of our hearts and we know it’s our responsibility to help individuals and families. As we are in this transition (away from Developmental Centers) we have simultaneously starved our local community infrastructure in many places. As we continue let us remember that our community partners are literally doing the Lord’s work and we have to be there for them.

Assembly Member Shirley Weber – We want to do this right. This is a commitment we have to the disabled community that’s very clear….throughout the year members from both sides of the aisle have said that this is the year to do something significant for our disabled community.

Assembly Member Melissa Melendez – It is certainly a community that deserves our attention. I think their funding levels have been abysmally low, considering who they serve, and I would ask that the members of the committee reconsider perhaps giving them the 10% that would keep them afloat.

Assembly Member Richard Bloom – Over the last few days I’m sure all of us have received the volume of phone calls, and the tweets by the hundreds…this is a group of individuals in the state that are organized around a very righteous issue from my perspective and I think the two houses have different approaches, but we are really aiming at the same goal, and that’s to try to repair something that’s been broken for a very long time.

Senator Ricardo Lara – Theres no doubt in my mind that we have clearly devastated the funding for regional centers and really impacted the lives of thousands if not millions of children and their families. We’ve really done a disservice to these families and these communities and the buck stops here, we are the ones who have to do everything we can to support these families.

I don’t yet know what their final recommendation will be, but I am heartened to know that they truly understand the need. Please follow their lead and approve their proposal to rescue this collapsing system.

Read on for Valerie’s Week in Review to see how my daughter’s life is being impacted now. You can also find this at http://www.valeriesweekinreview.wordpress.com

Thank you for your attention.

Sincerely,

Audrey deChadenedes

VALERIE’S WEEK IN REVIEW
Friday, June 5, 2015

It was encouraging to hear the support voiced by the members of the Budget Conference Committee this week. I am very hopeful as I wait to hear what they propose to the Governor. Meanwhile, low provider rates hit home:

On Monday we confirmed that Valerie’s Day Program is indeed closing. She’s been attending a tiny program contained in a large program; hers has been serving 14 clients who need one-to-one support, mostly due to a high level of physical disability. Another small program, the Senior Program for elderly clients, is also affected by this change. The entire Senior Program is moving from its’ offsite location; whatever remains of it will now be inhouse. All clients from both of these programs who have “intensive medical needs” are being sent elsewhere. What that means here is everyone who wears diapers, who needs to be fed, and who needs a gait belt for walking. There will be 20-30 clients affected by this closing.

The alternative being mentioned is an Adult Day Health Center, designed to serve “older adults” – a senior center. They’re not yet vendorized by Golden Gate Regional Center to serve the developmental disability population and there will certainly be a learning curve. At the time I spoke to Regional Center staff they hadn’t even started a conversation with them.  And while this may be a good fit for some in the Senior Program, the younger 1:1 clients might well prefer to spend their days with people closer to their own ages. I know Valerie does.

Even if every client finds a suitable placement, any move at all will be traumatic to the individuals in these programs. New locations, new caregivers, new bus schedules – all these changes are hard on clients and hard on their families. We must acknowledge how badly our system has failed when this large, nationally-affiliated service provider finds itself so hurting for funds that it’s forced to stop serving its most vulnerable clients.

I’ll be interested to see how the transition to an ADHC goes for all of the displaced clients, but it’s not an appropriate placement for Valerie. She and I have decided instead to return to the Self-Directed Program, which is what Val did during the 4 years she was on the waiting list to get into the 1:1 Program.

In the Self-Directed Program the family is vendorized by Golden Gate Regional Center to run an individualized day program. Families design the program, set goals and schedules, outline hiring criteria, training systems, and monitoring methods. The entire plan is then submitted to GGRC. Once approved, we locate, hire, train, and supervise staff; find activities in the community and keep daily records. We also establish ourselves as employers with the state and federal government and collect and submit payroll deductions. It’s a lot of work, and not something many parents want to or can do.

Is this the best choice? I think so. It worked well for Valerie before, and it will be a relatively easy change for her. She has a few more friends who are in this program now and she’s looking forward to getting together with them during her program day. It will certainly be more work for me, but I’ve done it before and I know what to expect.

It’s a step backward in my ultimate goal to build Valerie a life that doesn’t depend on my presence, but this is where we are now. We’ll work with what we have, and look toward the future for opportunities for improvement. As a state, we have a long way to go.

Valerie’s Week in Review – Friday, May 29, 2015

Dear Governor Brown,

I know it’s another week or two before you receive the amended budget. During this time, I humbly ask you to give some attention to the Developmental Service System, and how badly it needs your help.

Think back to the cuts and discounts and freezes this system has suffered for decades. Consider the erosion of services as funds dwindled. Think about programs offering less effective services, then fewer services, and finally closing. Think of people with disabilities living in the community, as is their right, with the supports that allow them to live independently slipping away. Think of low-paid staff who don’t show up on time or at all, transportation that’s so unreliable that appointments are impossible to keep. Think about fewer and fewer choices and think about how much restoration of funds would benefit these people, this long-suffering and much-deserving system.

I’ve heard people say that you don’t like entitlements. What does that mean? It can’t mean that you don’t see that some people need help to survive. It can’t mean that you think people with physical disabilities, developmental disabilities, mental illness, are at fault for their situations and don’t deserve help. It can’t mean that you don’t realize that we as a civilized society have a moral responsibility to take care of our most vulnerable citizens.

Please, Governor Brown, have some compassion. Restore funding to Developmental Services.

Thank you for your consideration.

Sincerely,

Audrey deChadenedes

VALERIE’S WEEK IN REVIEW
Friday, May 29, 2015

This week we learned the outcomes of the subcommittee hearings in Sacramento last week. The news was a little good and a little not-so-good. There were two different proposals.

The Assembly proposed a 10% increase across the board over two years… which means 5% in 2016 and 5% in 2017. I love that it’s across the board – money is desperately needed everywhere! – but it’s only 5% now, and it won’t start till January 2016 – too late for some programs that are just barely squeaking by now.

The Senate proposal is almost great. It provides the full 10% to many services. It provides for funds coming out of Developmental Centers to go into the DDS budget, and it provides for updating of rate setting methodologies. However, it ignores some critical services, like Regional Center operations, Group Homes and Day Programs.

Day Programs are very much on my radar this week since we received a confusing letter from Valerie’s program late on Friday, of course too late to speak with anyone there until Monday.

It addresses the 20-30 clients who are in the Senior Program and the 1:1 Program (Valerie’s program), in both cases clients with a high level of need. Although the letter is strangely indirect and cites no specific policy change, it mentions twice that individuals with “intensive medical needs” or “high levels of medical care and need” may no longer be served by this program. They say people who need to move will be supported by the Regional Center to make the necessary changes, and the letter assures us that there are possible options.

Does this mean Valerie? Maybe. Probably. She definitely has high medical needs, but they don’t actually do any medical care at the program. In fact, we contort her hydration and med schedule around her day there because they specifically do not give medication or deal with g-tubes.

Whether this means us or not, there are 20-30 people with high medical and support needs who will now have to be transitioned elsewhere. I – and the other folks who received this letter – will just have to wait until Monday when we can speak to someone at the program to find out what’s coming next.

This week the Budget Conference Committee will meet, look at the Senate and Assembly proposals, and come up with one that everyone agrees on to send to the Governor. Listen up, Conference Committee…Day Programs are shrinking before our eyes. We need help urgently, we need it across the board and we need it NOW.

Valerie’s Week in Review – Friday, May 22, 2015

Dear Governor Brown,

Valerie and I were at the Capitol this week; we were there for Senate Budget Subcommittee #3 on Health and Human Services on Tuesday, 5/19. I wish we’d been able to go the Assembly hearing on Monday, to show our support and to hear Assemblymember Tony Thurmond voice his strong support for restoring funding to developmental services.

The members of the Senate Subcommittee were also, all of them, vocal in their support of funding services for the developmental service system and disappointed and frustrated by your unwillingness to understand this urgent need. We listened to testimony after testimony, from self-advocates, from family members, from service providers, heartbreaking stories of program closures and system breakdown.

It was said, over and over: We’re not at the brink of collapse – the system is collapsing now.

It’s great that you put money in the budget to provide community-based supports for people coming out of the Developmental Centers in the near future. But the people already living in the community are suffering now from the disintegration of the infrastructure they rely on, that they deserve, that they have been promised.

Governor Brown, the state can afford this money. There is money now, and there will be a tremendous net gain to the state as more people are transitioned from Developmental Centers into the community. Please reinvest in this system now before it’s too late. So many service providers have closed their doors, more are barely hanging on.

Please. Open your eyes. Open your heart. Open your wallet.

Thank you.

Sincerely,

Audrey deChadenedes

VALERIE’S WEEK IN REVIEW
Friday, May 22, 2015

This week Valerie and I went to Sacramento to listen and give testimony at the Senate Budget Subcommittee hearing.

Val and I both wanted to go. We agreed that it was important to show up and speak up for this cause that matters so much in Valerie’s life.

But it wasn’t easy. First, we had a few things to decide:

-Can we go both Monday for the Assembly meeting and Tuesday for the Senate?
No. I could arrange to take that much time off, but Valerie needs to save some time at her day program in case she gets sick later this year. (I’ve mentioned in an earlier post that due to funding concerns, her day program will be forced to drop her and fill her slot with someone on the waitlist if she misses too many days.) We decided to take a calculated risk and skip one day, but that two days would be too many. So we were only there for Tuesday’s meeting.

-Can we bring an attendant with us? It will be so much easier to have help with driving and feeding and toileting and lifting and parking, and better for Val to have someone with two hands free to attend to anything that might come up for her during the 2-3 hour drive each way. The two real questions are: Is anyone available? And, am I willing to give up two nights out in exchange for this help, since we’ll be using that many IHSS/respite hours?
Yes and yes!!

-Can Valerie use her communication device to give testimony herself?
Sub-questions: Is she sufficiently up to speed with her new system and does she have enough motor control (especially under stress) to deliver her message accurately and at the right time? Do I have time/energy/brain power to program specific content into her device for this?
Probably not and probably not. Guilt factor: huge. We’ll bring it along.

Steps to take to get ready:

-Arrange for staff to come along
-Contact day program in advance (so they have time to plan for the best use of limited staff) and let them know Val will miss a day
-Contact bus company to let them know. But not until the day before, or they might (again) make a mistake and not pick her up on Monday
-(Call the bus company again from Sacramento to be sure they will pick her up on Wednesday)
-Plan medication schedule for the day (since it will be different timing from everyday)
-Strategize toileting/hygiene
-Strategize hydration, feeding, cleanup

Pack:

-Medications and supplies for administering
-Formula and tube feeding supplies
-Soft snacks for oral feeding when possible/necessary, and special utensils
-Personal hygiene supplies
-Communication device, charger and mount
-Extra clothing just in case
-Towels, washcloths, trash bags
-Buckwheat/flaxseed pillows to help Val stay comfy while spending hours in her chair
-Calming music and headphones
-Bells to ring at the 9AM Ring My Beall rally in support of Senator Jim Beall’s letter in staunch support of rescuing the developmental service system

We got to Sacramento; we found parking; we made our way to the rally and then on to the hearing. We listened to panelists speak of the complexities of closing Developmental Centers and the ongoing challenges to existing community-based services. We listened to testimony and we offered our own.

-Senator Holly Mitchell said that the Governor’s failure to respond to this funding crisis was “tragic and disappointing”. She said her office had received 275 phone calls in support of the Lanterman Coalition’s agenda.
-Senator Bill Monning said that he appreciates us, hears our calls, and that he feels a “moral imperative to heed our voices”
-Senator Jeff Stone pledged his commitment to the developmental disability community, and spoke of his bill, SB638, designed to ensure that funds coming out of Developmental Center closures go back into this system, not into the General Fund.

All emphasized the continued urgent necessity for us, the stakeholders, to keep reaching out to our legislators and to the Governor. We made our way home feeling slightly hopeful and ready to begin yet another round of emails and phone calls.

Later in the week, we learned that the joint subcommittee meeting on Thursday, 5/21 had yielded two proposals for restoring funding to our system, each one partly responding to this crisis and partly missing the point. It’s progress, but clearly, more conversation with our legislators is needed. Voting will take place next week; our work is cut out for us.