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

Dear Governor Brown,

This week I’m busy preparing for Valerie’s upcoming IPP, the annual meeting with our Regional Center case manager to plan for the year ahead. Val is turning 30 in May, and every year as we approach her birthday there are a host of meetings and forms and interviews to ensure that she’s still eligible for the services she receives.

As I put together the lists of medicines and doctors’ appointments and try to prioritize needs for the year ahead, I am so grateful for our Golden Gate Regional Center case manager. As you certainly know, California’s service delivery system is complicated and fragmented. We are left to find our own services, and we have to go to many sources to find them. The closest thing we have to a unifying perspective is our case manager.

It’s in this week’s report. Read on for Valerie’s Week in Review. Again, thank you for your time. Again, please restore at least 10% to Developmental Services. And again, you can read this online at http://www.valeriesweekinreview.wordpress.com

Sincerely,

Audrey deChadenedes

VALERIE’S WEEK IN REVIEW
APRIL 24, 2015

My focus this week is preparing for Valerie’s IPP (Individual Program Plan), our annual meeting with the Regional Center to plan for Valerie’s needs in the coming year. Her case manager is coordinating this meeting, and has pulled in other service providers for their input. Our group will include supervisory and direct service staff from Val’s day program, staff from a San Francisco housing agency we’re working with, and Val’s secondary IHSS provider.

It feels especially important this year to be sure that this IPP thoroughly documents all the services that make Valerie’s life work, since we’ll be getting a new case manager next month (someone who hasn’t been hired yet) and we expect some changes in Val’s life this coming year.

The case management piece of Regional Center services, while hard to quantify since it has no dollar amount attached, is in my opinion one of the most important services they provide. With California’s fragmented service delivery system, Val’s Golden Gate Regional Center case manager is one of the only people besides me who has an overview of her life and the myriad of services that keep it running.

He has been an invaluable asset in planning for Val’s future. When Val aged out of the school system at 22, our case manager was the person who knew all the options and worked with us until we had a plan that fit Valerie. He has helped me explore future living situations for Valerie when I’m no longer able to take care of her, and connected me with group homes, Independent Living providers and subsidized housing specialists, so I have the knowledge to make informed choices.

Because I have 30 years of experience advocating for my daughter, because I’m white, college-educated, and raised in NYC, I’m not afraid to ask questions and I can be pushy when I need to. I’ve been able to locate, access and manage many of the services Valerie needs on my own. Even so, I call on our GGRC case manager when I run into problems and need advice and help brainstorming solutions. For families without my advantages, the case manager’s knowledge of the service system is indispensable.

With low salaries and frequent staff turnover, there are fewer and fewer case managers working who have the experience and knowledge families need. With caseloads far above federally mandated numbers, case managers are stretched beyond their limits and can’t provide the individual attention necessary for each client. I fear that this crucial source of support and information for people with developmental disabilities and their families will not be available in the future.

For now, we continue with our planning. Val and I will talk on the weekend to be sure I haven’t forgotten anything in my notes for Tuesday’s meeting. We’ll try to write an IPP that’s a roadmap for the new case manager. I am doing my best, even as I cover our bases, to think the most optimistic thoughts.

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

Dear Governor Brown,

This week Valerie and I were at the Capitol in Sacramento for a day, and we stopped at your mailroom to leave you a hard copy of the letters and reports we’ve sent you so far. I hope you received them; I thought you might like to see a picture of Valerie, and to know that you can now read these letters and reports online at http://www.valeriesweekinreview.wordpress.com

We are writing again to remind you how much Valerie and others with developmental disabilities need funding restored to developmental services. We ask, we plead, for 10% now and 5% annually until this system is working.

If our report this week seems tediously like some of our earlier reports, well, it felt like that to us too as we were living it. There are so many issues I want to write to you about – housing, case management, the rising autism population – but again this week, we focus mostly on transportation.

Thank you again, Governor Brown, for listening to our stories.

Sincerely,
Audrey deChadenedes

VALERIE’S WEEK IN REVIEW
APRIL 17, 2015

On Monday morning we headed down to meet the van taking Valerie to her Day Program. The van was 45 minutes late (one hour of waiting for us, since we’re asked to be outside 10-15 minutes early). The van had a new driver, which was surprising since the ‘old’ driver had only been working since April 1st. In the afternoon the van arrived 40 minutes late, with a different driver. He was angrily complaining about having to cover this route instead of his usual route.

Fortunately, we had already decided to skip Valerie’s Monday afternoon Conversation Club meeting since Val was still catching up on rest after last week’s breathing challenges. Otherwise, with the van this late we would have missed it. Conversation Club is a group of young adults who get together once a week to practice communicating using their Speech Generating Devices. This would not have been the first time Val had to miss this group because of van delays.

On Tuesday the van didn’t pick Valerie up at all! I had called on Monday to cancel the afternoon portion of her ride since I was planning to pick her up myself for an appointment, but she was mistakenly cancelled for the whole day. When I called after the bus didn’t show up, the customer service agent apologized for the error on their part, but told me the bus company would not send anyone back to pick Valerie up. We were on our own, again.

On Wednesday the van came to pick Valerie up, but she wasn’t there because I had called two days earlier to cancel. We were on our way to Sacramento when I received a call asking why she hadn’t come down. Later in the day I called back, just to be certain that Val would get picked up on Thursday.

It worked, and the van did pick Valerie up on Thursday. It was forty minutes late but at that point I took it as a win.

I probably don’t need to mention that when people get paid enough they stay longer, they’re more qualified, and maybe they care more about the kind of job they do.

On Friday, Val had a seizure in the very early morning. As usual, she fell into a deep sleep after the seizure subsided. I waited for her to wake to see whether this would be a wake-up-alert-and-ready-to-go day or a complete-zombie-must-sleep day, and I thought nervously again about how close we were getting to her maximum allowed days out from her Day Program. It’s not the program’s fault that they have to bump clients if they miss too many days – they don’t get paid if people don’t come, and they can’t afford to keep fillable slots empty.

The good news is, Valerie woke up with a smile on her face and full of energy. The van came only 10 minutes late, and arrived in the afternoon within 20 minutes of the official time. I give thanks for small miracles and go into the weekend counting my blessings.

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

Dear Governor Brown,

Here I am again, with my second installment of Valerie’s Week in Review. Thank you so much for reading it.

I understand that it must be so easy, when you’re busy with numbers and language and politics, to lose sight of what life is like here on the ground. For my daughter Valerie and the other Californians living with developmental disabilities, years of underfunding to DDS have an impact every day.

I know you’ve been made aware of the enormous challenges facing Regional Centers and Service Providers. I know that you know how severe this crisis is right now, and how unsustainable the system is moving forward. Please restore 10% to California’s Developmental Service System now, and an additional 5% every year until the system is fixed.

Sincerely,

Audrey deChadenedes

VALERIE’S WEEK IN REVIEW
APRIL 10, 2015

Valerie was sick this week and had to stay home from her Day Program for a couple of days. It turned out to be allergies but since Valerie has compromised lung capacity to begin with, something very small can cause a very big problem. I gave her nebulizer treatments every 4 hours and monitored her oxygen levels around the clock. These are tasks which would require nursing if Val were not living with me. At times like this, and for parts of every day, I am doing LVN work at IHSS pay levels, thus saving California approximately $33 an hour. She’s back to herself now, thank goodness, and back to her daily routine.

Valerie’s cough was worrisome not only for medical reasons, but because her Day Program has a limit on how many days a client can miss. This program, the only one in San Francisco that meets her needs, can only serve 14 clients. Valerie was on a waiting list for 4 years before there was an opening for her, and if she goes over her limit she’ll be out of the program and back on the waiting list.

This program, and the larger program it’s part of, are struggling. Staff retention is very difficult, with California service rates among the lowest in the country. This is challenging work for low wages. The direct service staff stay out of love, and they are true heroes. Most them have to work two, and sometimes three, jobs in order to pay the rent.

Fortunately, my own allergies remained mild until later in the week, but eventually they hit. As I struggled in my weakened state to dress and prepare Valerie for her day, lift her into her wheelchair, and push her chair down to the van, I couldn’t help but look right in the face of my advancing age. I have been working so hard to build supports for Valerie on into her future, but there is not enough to build on, and what’s here is crumbling.

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

Dear Governor Brown,

I am the mother of a 29 year old young woman with Rett Syndrome, a severe neuromuscular disorder. I know how challenging it will be for you in the weeks ahead to make hard decisions about California’s budget.

I urge you to restore funding to the developmental service system. We need at minimum a 10 percent increase now, given the previous cuts and discounts that have devastated this system. We parents are begging for your help.

As a way to help you understand our situation better, I’ve decided to start writing to you on a regular basis. My plan is to send you Valerie’s Week in Review every Friday.

Valerie is non-verbal and non-ambulatory. She has spastic quadriplegia and uses a g-tube. She needs total care. She is also smart, funny, opinionated, beautiful, and a valued member of her community. Valerie lives with me and I am her primary IHSS provider. The services she receives through the Regional Center and In Home Supportive Services (IHSS) make it possible for my daughter to remain living in her community and in the least restrictive setting.

Even though I’m asking for more money for services for Valerie and others with developmental disabilities, I want to make it clear how very grateful we are for the system of supports that allows Val to live her life. However, as grateful as I am, I am enormously concerned about her long-term safety and well-being. I am in my 60’s and I will not be able to take care of her forever. I’m doing everything I can think of to ensure Valerie’s future, but I am very afraid.

Thank you so much for listening to our story.

Sincerely,

Audrey deChadenedes

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

This week we said goodbye to the van company that had been taking Valerie to and from her day program for the last 3 years. This old family-run company was no longer able to stay in business. As a Regional Center provider, they suffered from years of discounts and were unable to retain drivers at the low rates they could pay. It should go without saying that, as this company struggled with inadequate staffing, these struggles were passed on to their clients and for the past several months late pick-ups and drop-offs had become the norm.

On Wednesday, the first day with the new van company, Valerie didn’t get picked up at all even though we were in the proper spot at the proper time. It later turned out that crucial details about our location had not been conveyed to the new company and the driver was waiting in the wrong place. Even so, she would not come back to pick Val up and, as frequently happens, I had to rearrange my day.

Later in the week I found out that my daughter’s case manager at Golden Gate Regional Center is being promoted and we’ll be assigned someone else, most likely, I am told, a new hire. While I’m very happy for him, this worries me. Valerie’s needs are complex and we have worked with this wonderful person for years. I can’t blame him, though – Regional Center employees have not received even a COLA raise since 1990. This has made it difficult to keep experienced staff, and caseloads are seriously out of compliance with Federal guidelines, putting California at risk for losing crucial Federal funds.

Valerie’s secondary IHSS worker is away for a family emergency and I’m currently looking for a new respite care provider (not so easy to find at discounted pay rates) so Valerie and I will be on our own this weekend. We plan to have a fun weekend, and we wish you the same.