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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