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Creating a Day Program From Scratch

It has been 6 months since I last wrote in this blog. During that time I’ve worked hard hunting for a program that fits Rhia’s needs. A program that includes activities, friends, art, excursions into the community and people who speak American Sign Language. She was placed on the waiting lists of two different programs that had everything except ASL and she tried out one, but it was a disaster. Then we found an incredible program in San Francisco for people who are Deaf and Developmentally Delayed. However, there was no transportation to get her there. We fought hard and finally the Regional Center agreed to provide it.

At last, she could go to ToolWorks!

Not so fast… Just like every program in California, ToolWorks is short staffed and struggling to meet the needs of the people already in their program. As soon as they had staff, Rhia could go!

We waited four months.

Finally, I’d had enough; we decided to hire people and create our own program. I put out an add for caregivers and quickly heard back from several interested people. Out of 10 applicants I interviewed 4. Actually I interviewed 2 because one no-showed and another cancelled. I hired one brilliant woman who met all the qualifications, including basic Sign Language, but she texted me an hour before her shift started, saying she wasn’t coming. After a good cry I ran the add again and thankfully hired a dependable, kind woman who actually shows up and takes great care of Rhia. Unfortunately she doesn’t know sign language.

Fine. We can work with this. With dependable staff Rhia can start finding things to do in the community. She loves the library, so they can go there. She also loves coming to my work, so I pay her to clean toys on Friday afternoons. She also likes being helpful, so she and her caregiver do the grocery shopping on Mondays. They also clean the kitchen every day. It’s a start, but far from what I dreamed for her, and I suspect far from all she’d like to do.

Rhia wants to be a teacher and work with young children. She loves creativity and making art. She enjoys going out to lunch and window shopping with friends. And she loves talking to people. Unfortunately, no one can really have a good chat with her except me.

Rhia doesn’t have close friends; she has caregivers.

She isn’t alone; so many disabled young adults are isolated from their peers, which is why a staffed Day Program can be great. How wonderful to spend the day with other people just like you, young adults who need help in the bathroom and use a wheelchair, have trouble communicating and can’t even feed themselves without help. Outside of a staffed program it’s just you and your caregiver.

The caregiver has worked a month, so they are still getting to know each other. They go on short outings and run errands for Mom. Rhia is slowly warming up to the caregiver as the caregiver learns to communicate with her. This gives me hope that in time they’ll be able to do more together and Rhia will make connections with others in her community. We’ll all figure out what activities are available and what she will enjoy. It just takes time.

Time… It’s been over a year and Rhia and I are still trying to find a way for her to have a life filled with fun and friends.

I’m so sorry, Rhia. I thought moving to San Mateo would make life easier for you.

Where have all the Day Programs in California gone?

Once upon a time there were wonderful places called Day Programs in California. These programs provided social opportunities, vocational training, emotional support and entertainment for thousands of Californians with disabilities. Everyone found a place to belong, no matter the disability or impairment.

Those days are long gone… or maybe they never existed. Maybe great day programs have always been mythical, like unicorns and Starbucks drinks that won’t make you fat. But what I’ve heard from people who work in programs and the State agencies that support them is that there once were a lot of really good opportunities for people with disabilities in California.

Used to be… that’s the key phrase. Thanks to budget cuts and astronomical rents, day programs have had to shut-down. One after another has collapsed under the growing cost of rent, the need to pay a living wage and the yearly decrease of funding from the State. Most programs are supported by the Regional Center, a State agency that vendors with local people to provide programs and activities. The Regional Center can only pay what the State allows, but the State doesn’t provide much more than minimum wage, a rate that is impossible to live on. Programs rely on grants and other private supports to get by. Those funding streams have also disappeared, which is weird because it’s not like there isn’t a ton of money in California. Programs also need a space to provide the services, but rents have pushed “site based programs” into “community based programs”, which are not always the best option for people with disabilities. Even the community based programs are financially challenged because they then have to provide transportation and staff to support their clients. They can only pay a little more than minimum wage, which no one can live on, so staff turnover is high. Eventually those community based programs are forced to shut down, too.

Every year the State budget cuts program funding for people with disabilities and more people are forced to stay home, which strains the families who care for them. How are they supposed to pay their own rent when they miss work providing care to a loved one with a disability?

There once was a State Hospital Program which cared for thousands of people with Developmental Disabilities. And yes, I know the Hospital system was awful and people were mistreated and hidden away from the larger society. Happily, most of those State Hospitals have shut down and people with disabilities returned to their families or placed into smaller group homes. But here’s my question: where did all that money go when the State shut down the State Hospital System? And if day programs and care homes are being forced to close, where exactly are those people who were once in State Hospitals going?

My daughter isn’t the only person being impacted by the broken Regional Center system. I see good people in that system every day fighting for their clients, only having to tell those same clients there’s nothing they can do. Clients, family members, caregivers, and social workers are all struggling with the lack of funding to support day programs and group homes. The State of California needs to provide proper funding again. I heard they used, but that was a long time ago in a land far, far away…

Maybe that’s where unicorns went as well.

Who Knew Starting Pre-School Would Be Easier Than Starting a Day Program?

When Rhia was 3 and began pre-school, she happily took her teacher’s hand and waved to me. “Bye Mama!” She then turned away and tottered off to her new class. I was stunned. Where were the tears? The clinging, wailing, begging me not to go? Everyone had prepared me to be strong and walk away from my crying child. Instead, I was the one crying as I waved. “Bye-bye Baby.”

Fast forward 21 years. We are standing in the library, meeting the aids and participants of her new day program. For 8 months I have been fighting to get her into a program and at last we are here! I’m excited for her to meeting new people and begin her new life in our new city. Rhia on the other hand…

“I don’t want to be here!” Her cry echoes off the library shelves. Everyone in the once quiet building stares at us.

“But sweetie, this is where you’ll make new friends.”

“No!”

“We talked about this. You’re starting a new program so you’re not stuck in the house all day.”

“I like being home.”

“I know, but you can’t stay home anymore. I have to work…”

“Then I’ll go to work with you.”

“You can’t come every day…”

“Why? I like it there.”

“Rhia, it’s okay to come to my work sometimes, but not all the time.”

“Well I’m not gonna come here.” She hunches her shoulders and looks down, essentially blocking out any further discussion. Arguing with a deaf-girl can be annoying.

I wait… and wait… and wait… then I bend down until she can see me and sign, “Please give it a try.”

Rhia looks up at me and bursts into tear. “But no one knows my language! I can’t understand anybody!”

That is the whole problem in a nutshell, and is why it’s taken 8 months to find any program at all. No one knows American Sign Language. Rhia uses her voice to speak, but needs ASL to understand what people say to her. She is deaf, but there are no programs that provide interpreters. This new program is willing to learn ASL as fast as possible and provide whatever support they can to help Rhia understand, everything from pictures to icons to visual schedules. They are going beyond their limits to create something for her, while recognizing that communication won’t be a quick fix. I bought a new iPad with a communication program all set up for her to use. And I’ve come with her to train staff and provide emotional support to help Rhia with this transition.

But I go back to work next week. It’s time for Rhia to start her program. There’s nothing more I can do. I can only imaging how terrifying it must be to spend your day with strangers who don’t know your language and you can’t understand what is happening. When I leave her at her program on my first day back to work, I suspect we’ll both be crying.

I’ll keep looking for a better fit. In the mean time, this is the best we can do, and I feel guilty as hell.

Dear Universe, please help Rhia

Dear Universe,

Please give Rhia a break. She is stressed and sad and no matter how much I try I am unable to do anything about it.

In just the last 5 days we have run into numerous obstacles. Last Friday, she met her new neurologist. Or so we thought. Instead we talked with a person who probably isn’t the correct type of neurologist for what Rhia needs (who knew there were so many kinds of neurologists?). The doctor was kind, but not the right one. She refilled medication that was lost during the MediCal transfer to this county and made several referrals to other specialists. She was helpful yes… but I was really hoping to get Rhia set up in the adult system.

The next day I went to the pharmacy to get Rhia’s medication and learned that MediCal denied it. This medication can help her body maintain body temperature, something especially important in the summer. But it’s expensive so MediCal is refusing to pay. The pharmacy and doctor are trying to solve the problem and I may need to begin the appeal process. Sorry Rhia, here’s another cold pack.

Then on Tuesday I got a call from the Undiagnosed Disease Network (U.D.N.) to discuss their findings. Both Rhia and I had our entire Genome mapped, a process that looks at every genetic code and variable we have in our bodies. And guess what… they found nothing. Not a single anomaly. Genetically everything looks fine. They still need a genetic sample from her biological dad to compare with Rhia’s, but right now, they can’t figure out what is causing Rhia’s disorder. The U.D.N. is the biggest research organization in the entire world specializing in rare and undiagnosed diseases and they can’t find the cause of Rhia’s degenerative condition. If they can’t figure it out, who can?

Thursday was when she started her new program… well, she was supposed to have started. But when we arrived in the morning we learned that the authorization wasn’t finalized. We had a start date and a green light from her social worker, but the program couldn’t let her start without authorization. Rhia has been crying and angry about starting a program for two weeks! She finally agreed to try it… but now… I doubt I’ll get her to try it again.

Universe, Rhia has had one challenge after another since she moved here in October. First her Social Security was cut, then her MediCal delayed. She’s been on waiting lists for programs. She has now “almost” started two. The first start was due to no communication support and the next one due to a paperwork problem. She is stressed, frustrated and lonely. She needs community and something to do. She is trying so hard to grow up and all she gets is slammed doors in her face. Please dear Universe, if you could just give her a tiny break. Something’s gotta give here, and it can’t be Rhia’s mental health. Or mine.

Signed,

Super angry-frustrated-exhausted-sad Mama Bear.

Rhia almost left 8 years ago

Rhia drinking a hot chocolate at Starbucks, age 20

8 years ago, Rhia spent Easter in the hospital, hooked up to IV’s and undergoing too many tests, because she had almost died. Two weeks earlier she’d had the flu, but even when the virus ran its course and the fever vanished, her body didn’t recover. She slept all the time, could barely speak, and her eyes became blank and unseeing. Then she started choking on water. We rushed her to Stanford Children’s Hospital and they admitted her for Metabolic Distress.

It took a couple of days to stabilize her and a full week before she could go home. It was during that time we got an official diagnosis for the cause of her disabilities: Mitochondrial Disease. Her doctor’s had suspected it was “Mito” but until she was hospitalized they weren’t certain. They still weren’t; the tests came back negative but all the symptoms pointed to Mito. The possible causes of her ataxia and degenerative neurological symptoms had been narrowed to the spectrum of Mitochondrial Disease.

But what did that actually mean for Rhia and her health? Would she recover from her medical crisis?

They let her go home when she could swallow water and other liquids again. She still couldn’t eat food, so she was referred to a Speech Therapist to relearn how to swallow again. If she didn’t recover, she would need a feeding tube. Time would tell…

Later, we were told if she reached the age of 20 it would be a miracle. She was 16.

8 years have passed and Rhia is still here. She turns 24 next month, and thankfully she did learn to eat food again. And she’s still walking, although I swear she’s walking because of tenacity, not strength and coordination. She never fully recovered her energy and strength from 8 years ago, but she and I learned to manage her new “normal” and find ways to cope with her increased fatigue. Some days are great; she sings and laughs and loves exploring her new city. Other days she can hardly hold a crayon in her hand. She’ll sit and stare into space as if all her energy is needed to stay upright. It can switch back and forth every hour.

We roll with it because this is a part of Rhia. No matter what, she keeps smiling and I keep trying. Both of us get frustrated sometimes, but we both find a reason to laugh. It’s impossible to stay sad for long around Rhia.

Rhia smiling, wearing glasses, and drawing with a large marker.

How long will she stay here with us? No one knows. Her doctors are amazed and thrilled to see her thriving as well as she is. Who is this remarkable person who keeps surpassing everyone’s expectations? She is my daughter and I am so proud of her.

Thank you for these extra 8 years. I treasure them all. And I will treasure all the years we still have together.

Who will interpret?

I helped Rhia pack and then took she and her step-dad to the airport. One of his cousins was getting married, so the whole family was getting together. A big wedding celebration with all the cousins and extended family. Rhia would see her Gran and Gramps and aunts and uncles, first and second cousins and friends of the family. Everyone would be there… except me. I was invited, but between work and grad-school I needed to stay home and study. Plus, who would watch the dog? And really, I am now the “ex-wife.” They are kind people, but do I really need to show up at a family wedding?

This is the first time Rhia has gone on a trip without me and she is not happy! Who will help her communicate? Who knows Sign Language? Who will help her in the bathroom and wash her hair and get her dressed and eat dinner? She wanted details on how EXACTLY Rick would help. “Boys are hard to understand,” she complained. I tried to reassure her, but I too was worried. Since I’m the one who helps her communicate, who will do it if I’m not there?

I was hoping to have her iPad set up with the “Go Talk Now” app ready, but I didn’t have time. Plus, I discovered her iPad doesn’t have enough memory. I need to get her a new iPad, set up the device, learn “Go Talk Now”, program it, and then teach Rhia. I’m sure if I give up sleep I’ll have time to do that. But first I need to work and teach other kids and deal with lesson plans and IEPs for them, then do my homework for my own classes, and study for my math test… but no problem. I’ll master “Go Talk Now” at midnight!

If I don’t have time anymore to help my child, did I make the right decision moving here? If I am no longer available to help her communicate, is moving her closer to her doctors such a great thing? Here’s some great health care, but you won’t understand what’s happening because Mommy’s at work. Sorry kid.

I know it’s good for Rhia dn I to be more autonomous, but mommy-guilt is a big, ugly beast with five heads and poisonous teeth. The minute you think you’ve got it under control, two heads will wip around your shoulder and bite your jugular vein.

After I drove home from the airport, I pulled weeds in my yard and cried. I cried for my daughter who will try to figure out what’s happening surrounded by people who speak a language she doesn’t understand anymore. I cried for the end of my marriage that forced us to move. I cried because life has changed so much and I am exhausted but have to keep going. I cried because I’m rebuilding my daughter’s and my own life. I cried because I still love my ex-husband and his family, who are no longer mine.

I hope they are still Rhia’s.

Just because you have MediCal doesn’t mean you can have a doctor

We were told it would take 4 weeks to transfer Rhia’s MediCal from one county to the new one. It took 4 months. A government shut-down slowed the transfer down even more. Plus, there was a huge backlog at the State level from so many people applying for MediCal through the Affordable Care Act. So, four months later, Rhia’s MediCal was approved and we were ready to find a doctor.

Just because you have MediCal doesn’t mean you can have a doctor.

Every clinic I called said they were no longer accepting MediCal patients; they had all reached their quota by February.

Great!

I asked the first two clinics if they were accepting new patients and they said yes. We started the intake process but as soon as I got to the insurance part, the answer was, “Oh… we’re not accepting new MediCal patients.” After that, I started the conversation asking if they were taking MEDI CAL patients. Two more clinics said no.

Finally, the fifth clinic said they were accepting MediCal. And, miracle of miracles they had an appointment open in only 2 weeks! I grabbed it, wrote it down, hung up the phone and burst into tears.

Everything was on hold waiting for a doctor. We needed a doctor to sign the forms so she could start her day-program, but that couldn’t happen until MediCal cleared. While we were waiting I was out hunting for a day program with an opening, so now she’s on two waiting lists. Thankfully one program had an opening in December and they were kind enough to hold the spot for her.

Since December! (Thank you, thank you, thank you…)

Access. The doctors are excellent here, but not everyone has access. How many more openings are there for MediCal patients? Did the clinic that accepted my daughter eventually say no to the people who called afterwards? How many people with disabilities are hunting for a doctor right now?