Nikki Diaz is slowly dying. The 48-year old has a degenerative muscle disease that is causing her muscles to literally waste away.
"I can only move my fingers and my wrist and my feet and my toes and my head," explained Diaz. "Everything from chewing to swallowing to breathing is difficult."
It wasn't always like that for Diaz.
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"I used to be able to tie my own shoes, button my own blouse, apply my own makeup," said Diaz.
That began to change at age 12 when her condition began to deteriorate. Today, she is wheelchair-bound and dependent on in-home caregivers.
"I need my caregivers to do everything for me," said Diaz.
But being dependent on help doesn't mean she can't be independent. While many tasks that most people take for granted are difficult for Diaz, she's still living at home and enjoying a full life in part because of a government program called In-Home Supportive Services, or IHSS.
"If you are a person with a severe disability, you choose a person who will work with you and provide you personal care and home care," explained Lillibeth Navarro, founder and executive director of Communities Actively Living Independent & Free (CALIF), an advocacy and civil rights nonprofit for people with disabilities.
"So they could live independently at home as opposed to nursing homes and other expensive institutions," she added.
It's a simple concept. Those who are severely disabled or elderly who qualify for the program select a caregiver and the county and state governments pay for it. But Diaz and Navarro say the system is anything but simple.
"It has been complicated by I would call paper terrorism," said Navarro. "What used to be very easy, very organic is now complicated."
Diaz says those complications have translated into long delays in getting her caregivers signed up and paid.
"In my recent experience, it took three and a half to four months to get my caregiver started and paid," Diaz said.
Because she can't function without help, Diaz has had to take on extreme measures to keep her caregivers working.
"I took out loans to pay my caregivers so that I could keep them around," said Diaz. "I am still paying them off."
Diaz is not alone. The NBC4 I-Team spoke to other IHSS recipients, former participants and advocates for people with disabilities about the program. All of them had similar stories about long delays in getting caregivers registered and paid.
"I had so much difficulty in obtaining a worker and then retaining the worker that they actually kicked me off the program," said Mike Banfield, a brain cancer survivor who underwent a craniotomy.
"They removed a third of my brain," explained Banfield. "I'm paralyzed all down the left side," he said
Banfield said he went through at least ten caregivers while in the IHSS program because of problems getting them registered and paid on time. He says it would take at least three to four months to get a paycheck.
"A whole lot of them didn't stick around as soon as they figured out that they weren't getting paid and that they weren't going to get paid in a reasonable amount of time," said Banfield.
Banfield says he was eventually kicked out of the program because he couldn't retain his caregivers. He says the program staff blamed him for the problem but it was the system that let him down.
"Horrendous, terrible, terrible, way too much paper, way too much worrying if you were going to actually get into the program and how that program was going to be paid for," said Banfield.
The IHSS program is a partnership between the California Department of Social Services and local counties. In Los Angeles County, 220,000 people use the program. Statewide, it's over a half a million.
IHSS participants first select a caregiver; family members are eligible. That person then applies to be part of the program. Caregivers are required to attend an orientation and undergo a background check as part of the process. They are also required to fill out regular time sheets based on the hours they are assigned by a social worker who manages the case. Caregivers currently make $11.18 an hour.
"I think the IHSS program is probably the best program that the state offers," said Cynthia Schmidt, who is in charge of Los Angeles County's In-Home Supportive Services program. "I don't pretend to say it's at all a perfect program, there is a lot of good things that come out of this program though."
Schmidt says the program is allowing the elderly and people with disabilities to live safely in their homes and avoid institutions. She says her team is regularly working to improve the program and that includes streamlining the application process and rolling out an electronic payment system.
"One thing we do really well is when an issue is brought to our attention, we do a very quick fix," said Schmidt. "I am committed to making this a better program."
For those experiencing problems, Schmidt encourages them to reach out to her or a member of her team. She says she will look into any problems with specific cases.
"I can address it one at a time if I get a specific case," Schmidt said.
But Sheila McNair, the finance coordinator at Jay Nolan Community Services, a nonprofit that provides services to people with developmental disabilities, says these aren't once in a while problems.
"It's an ongoing problem. It's not just one or two people. It's across the board," she said.
McNair works with around 60 IHSS recipients at any given time. She says most of them have issues with the program.
"They're not getting paid on time," said McNair. "For a new hire, we're looking at anywhere between three months to a year."
McNair says the program is confusing and complicated to navigate and that the rules aren't enforced consistently. She believes caseworkers are overworked and that the program doesn't have the resources to be run properly. And she worries about her clients who are dependent on their caregivers for their basic needs.
"They're not able to go grocery shopping, they're not able to cook their meals, they're not able to get bathed," explained McNair. "They're the ones suffering day to day."
Navarro, who is disabled herself and uses a wheelchair, agrees.
"People actually die when they lose their home care. They die," said Navarro. "We have to go back to where we can simplify things and let people live."
Diaz is hoping to live as long as possible. And while she's here, she wants to stay at home and live the fullest life possible.
"We already have enough on our plate. Most of us are not incompetent. We're very capable of staying independent," Diaz said. "Don't make it harder. Don't make it harder than it has to be."