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?

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