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.