My name is Karin Willison. I was born with cerebral palsy and use a wheelchair, but I’ve never let that stop me. I fought against the odds to move across the country, attend Stanford University, and live a fulfilling life in LA and later San Diego, California. I earned my Masters degree, started my own business, and owned a beautiful home. I lived independently with the help of in-home caregivers funded by the California state In-Home Support Services (IHSS) program.
My world was shattered on November 28, 2014 when my loyal caregiver of five years, C, and I were attacked in a home invasion robbery. The perpetrators of this horrific crime were later identified as an IHSS-registered caregiver I had recently let go and her boyfriend. In February 2016, Jennifer Martinez and Herbert Cruz pleaded guilty and received lengthy prison sentences. You can read the full story of my ordeal here: Attacked By a Criminal Caregiver: Part 1
Although my situation is extreme, it is not unique. Thousands of IHSS recipients are victimized by criminal caregivers, with little to no response from the IHSS administration. In fact, the structure and management of IHSS makes people with disabilities targets for theft and abuse.
For those who are not familiar with In-Home Support Services (IHSS), it is a state run program providing Medi-Cal (Medicaid) funding for in-home care attendants to help people with disabilities live safely in our own homes. The program is primarily for low-income people, but there are also provisions for working adults with disabilities to receive help. The program allows people with disabilities to choose and hire our own attendants. Our caregivers receive checks from the state – or in the case of people with significant care needs like myself, we can receive Advance Pay, a monthly check sent to us, from which we pay our care providers. Employees must pass a background check and attend an in person orientation before being approved.
On paper this sounds like a great program, but in reality it’s full of flaws. These problems are more than irritating or frustrating – they lead to real harm and danger for California’s vulnerable elderly and disabled. In some cases, the program itself actually victimizes us by denying needed services, treating us as potential criminals, and violating our dignity.
The first major point of failure and abuse is the service assessment process – the yearly home visit made by a social worker to evaluate a disabled person’s need for in-home care. The process is highly intrusive and relies too extensively on the opinions of unlicensed social workers with little training or medical knowledge. The state attempts to use an unbiased “functional index ranking” to assess a recipient’s ability to perform various tasks and “time for task guidelines” to calculate hours. However, these rankings are based on the social worker’s opinion of a person’s abilities, rather than medical documentation or the recipient’s own statements about his/her daily routine. Time for task guidelines do not account for differences in medical conditions and needs, and while social workers can override them, they rarely do so. As a result, people with the greatest needs are often denied adequate hours.
My own experience starkly illustrates the struggles a person with a severe disability has in getting needed services. Before applying for IHSS, I researched the program extensively, studying how they determine needs and decide how many hours applicants receive. As my needs are significant, I documented in detail how much time I required for each task, including explanations of why my most personal needs – dressing, bathing, using the toilet – take the time they do. Yet that was not enough. Despite the several pages of detailed information I gave her, my first social worker seemed to already have a set number of hours in her mind when she arrived at my home to evaluate me. She out-and-out said that I wouldn’t get as many hours as I “wanted” – as if any person would want more care than they actually needed – and made it evident that she would disregard my documentation, while also claiming to be impressed by it. When I received my “Notice of Action,” I found that she had given me only 180 hours per month, 100 less than the IHSS maximum of 283 that I required.
The state of California provides an appeals process for those who wish to dispute their IHSS hours. The applicant must go to a hearing at which they present their case before an administrative law judge, while their social worker and a county representative sit on the other side and argue against their receiving additional services. That’s right, the social worker is not an advocate, she is an adversary against the disabled and needy, going against everything the profession represents. The hearing is recorded and presumably stored in county records.
At my hearing, I was asked many deeply personal, invasive questions by both the county rep and the judge. I was asked how long I needed to spend on the toilet, and forced to repeatedly answer detailed questions about my menstrual cycle and bathing habits, despite the fact that I had provided written documentation of that information. At every turn, my answers were doubted and questioned as if I were a scammer. They even argued about whether taking out the trash should be allotted three minutes or five minutes of time. In an incredible display of ignorance, when I described my need for more time to get dressed, my social worker questioned it and stated that she has watched videos of disabled people being dressed, and “it didn’t take that long.” I replied that I am not a video, I’m me and I can only speak to the time it takes for me.
I managed to stay calm and professional throughout, although I was close to tears at all of the humiliating personal hygiene questions. Afterwards, I cried and had panic attacks for days. I felt violated and stripped of my dignity. People with disabilities should be taken at their word about matters so private, and not be forced to go to a court hearing to get funding to use the bathroom. Details of our personal care needs should not be subject to recording and storage under unknown security conditions. We as a society should not be wasting tax dollars arguing in court hearings about minutes of care, letting bureaucrats nickel and dime away services people need to live independently.
Thankfully, the judge took my side and gave me most of the hours I asked for. But I often think of those who are are too frail or afraid to endure the grueling appeals process. The routine and unjustifiable denial of documented need for care has surely led to injuries, hospitalizations, and even deaths.
Once an applicant for IHSS gets approved, he or she can then go about hiring a caregiver. This brings us to the biggest problem with the IHSS program: the pay provided to attendants is abysmal. It’s set by county, and San Diego has one of the lowest pay rates in relation to our cost-of-living – $9.85 per hour. After withholdings, it works out to $9 per hour – minimum wage. That’s right, the state pays a McDonald’s wage for people to come into the homes of disabled and elderly people and help them bathe, dress, clean their homes, go shopping, and more. They are effectively pairing the least educated, least trained, and most financially desperate employees in California with our most vulnerable citizens. It’s a recipe for disaster.
Due to the low state wage, I supplemented the pay of my attendants, because I knew I could not attract a quality employee otherwise. However, that did little to protect me from having to hire the marginal individuals associated with IHSS. Although anyone can register with IHSS, they must get approved first. The process begins when a potential IHSS caregiver calls Public Authority to request an enrollment packet. It typically takes 1 week just to receive the packet in the mail. After the packet arrives, the caregiver must fill it out, and bring it to a three hour, unpaid, in-person orientation. Orientations are held only during daytime business hours, and are often so full that people get turned away. This makes it difficult for caregivers who work during the day to attend. Fingerprinting is done at the orientation, and the caregiver must pay for it themselves. It then takes six weeks or more to get approved. Wait times of up to four months are not uncommon. They claim this is due to the background check, however other employers can simply send their new hires to Live Scan and get results back in 48 hours.
The state will not pay caregivers while they are waiting for approval. So if the disabled employer can’t afford to pay them in the meantime (and most can’t, since IHSS is primarily for low income people) the caregiver must work for months without pay. On top of that, allocated funds must be used within 90 days. For the Advance Pay program, caregivers must submit time sheets for all of the money the recipient received within 90 days of that month. If they don’t, the recipient must return any unclaimed funds. That means if you have Advance Pay and hire someone who isn’t already IHSS registered, it’s unlikely they will be approved in time to be paid the money before you have to return it. This effectively makes the Advance Pay program useless for one of its major stated purposes – to give people with severe disabilities flexibility in hiring, and the ability to ensure our caregivers are paid on time.
Even if IHSS recipients want to set a higher standard, or hire a family member or other caregiver of choice, an unexpected job opening practically requires hiring someone who’s already IHSS registered. There were three occasions when I hired someone I would not otherwise have chosen because they were already IHSS registered. All three of these people turned out to be inappropriate for my situation, and did a poor job. The third individual orchestrated the attack.
Ask yourself: Who is willing to work hard at a job that requires considerable skill and patience but pays minimum wage, and then only after working for six weeks or more? The answer is only family members, and desperate people who are likely to take advantage of their employers. For those of us without family nearby, the situation as it stands places us in danger of theft and abuse.
I was told by one of the patrol officers investigating my case that she is called on a regular basis to investigate crimes perpetrated by IHSS employees. My story, though extreme, is an example of the theft and abuse that goes on every day in the IHSS program. And when abuses happen, IHSS social workers and supervisors do little or nothing to help. I contacted IHSS shortly after I was attacked, leaving at least three messages for my assigned social worker over several days, but my calls were ignored. It took a call to the supervisor’s supervisor to get any response. By that time, over a month had passed since the crime. When the supervisor called me, I asked if there was a process for identifying and removing abusive caregivers from the IHSS registry. He said I should contact the state Public Authority and they would flag her in the system. I did so that same day, but I have no idea whether they did anything to prevent her from working for IHSS.
To make matters worse, in Dec. 2014 my Advance Pay was terminated with no notification or explanation. Therefore, I had no money to pay C for her final two months of work, and had to borrow money from a relative to pay her. I told my IHSS worker about this in my multiple calls, and emphasized that C had also been a victim of the attack, but that apparently did nothing to make anyone care.
On February 23, 2015 I finally received a call back from my IHSS social worker. This was shortly after I began posting my story on social media, and detailing how the problems with IHSS create and contribute to dangerous situations for people with disabilities. She said she would look into my situation, and try to get my last two months of Advance Pay plus the several months of back pay I never received. So far, I have received half of my back pay, and my call about getting the rest of it has not been returned. Thus far my attempts to get my Advance Pay are failing. They are refusing to issue me a check, and are instead insisting they should pay C – even though I told them that I already paid her. I was supposed to be on Advance Pay and should be reimbursed.
I was attacked and my life ruined by someone who was approved by IHSS, who should have been safe to hire, and whom I had little choice in hiring due to the backlog in their approval process. Rather than taking responsibility for their failure and doing everything possible to make things right, they have ignored my calls, disrupted payments to my caregivers, and failed to even give me the money I am owed. It’s not right, and those responsible need to be held accountable.
So how do we fix it?
The IHSS program is in dire need of reform and streamlining to better ensure the safety of its participants. Just a few simple changes could make the program simpler, kinder, more fair, and even save the state money in the long term.
Streamline provider registration
The caregiver enrollment process as it stands is far too complicated. While it might seem that an in person orientation could improve client safety, it actually makes it more difficult to get new caregivers enrolled. Most states use an application that can be filled out or printed from online, and a video or guidebook orientation the caregiver can review on their own time schedule, eliminating the cost and hassle of orientation classes. Streamlining the application process would not only make it easier for people with disabilities to hire new caregivers, but it would save the state a lot of money, because they would not have to staff orientation sessions.
The state also needs to create an expedited enrollment program for providers who care for people with severe disabilities. We can’t afford to wait months for new caregivers to get approved. In this era of instant online background checks, there is no reason why a “preliminary approval” program couldn’t get new providers enrolled within a week of applying.
Expand background checks and transparency
Under the current system, copies of background checks are not provided to the IHSS care recipient. Certain crimes do not even disqualify the applicant from providing care. I believe we should have the right to know the complete criminal history, if any, of our employees without having to pay for another check ourselves.
With that said, background checks are good, but they’re not enough. The caregiver who orchestrated the attack in my home passed her background check. Basic criminal record checks tell you nothing about the person’s friends and relatives. There needs to be a documented and transparent system for reporting criminal, abusive, and neglectful behavior by caregivers. Serious allegations should be investigated, and caregivers should be flagged and banned from providing care via IHSS, and reported to all caregiving agencies statewide if there is any evidence of wrongdoing, even if a criminal prosecution does not take place.
Pay a fair living wage
The best way to prevent crimes against our disabled and elderly is to pay a fair wage that attracts responsible and competent individuals to the job. Full time caregiving should be a career that provides a comfortable standard of living, while part-time caregiving jobs should provide a solid income for those needing work while in college, parenting etc. 1.5 x the state minimum wage is a good place to start, with a minimum of $1/hour extra in counties designated as having a high cost of living, such as San Francisco, L.A., and San Diego.
Some have advocated amnesty for illegal immigrants as a method of solving the shortage of caregivers, but I believe that would put people with disabilities in even more danger. I’m not comfortable with having someone who already broke the law caring for me in my home, particularly when that person still has citizenship in a nearby country to which they could easily flee after victimizing their employer. Caregiving should be a job for citizens and legal immigrants, not a starter job but a legitimate career. If it simply paid better, it would be.
Of course the government is not going to be anxious to raise pay for caregivers when it will take more money out of the budget. However, they need to look at the whole picture. Home care even at a higher pay rate is significantly cheaper than nursing homes, not to mention the improved quality of life for people who can live in the community rather than locked away. Some of the extra cost could be saved by making other changes suggested in this article. Higher pay would decrease turnover and clear out the glut of inactive caregivers in the state registry, leading to less paperwork, fewer calls to the IHSS program etc. Reduced crime associated with criminal caregivers would also save the state money. I’m sure it has cost the state more to investigate the crimes perpetrated against me than it would have to simply pay my attendants a living wage.
Offer training incentives
Several recent articles in online media have proposed mandatory training as a solution to some of the abuses within IHSS. Unfortunately, I fear that would only make the problem worse by making it more difficult for new caregivers to enroll in IHSS. At the current pay rate, it is already hard to find qualified individuals to work for IHSS. Forcing them to do many hours of presumably unpaid training would make it impossible. In addition, training is not necessarily needed by all people with disabilities, as many of us can and prefer to train our own caregivers in the way we want things done.
With that said, it could be quite advantageous for IHSS to offer optional training, particularly when completing that training would result in a pay raise. There is no need to reinvent the wheel when it comes to training. IHSS workers could receive higher wages for getting CPR certified, or taking basic first aid. They could be eligible to attend CNA or medical assistant programs free of charge, with a bigger pay increase upon completion. Such a program would create a stable career path for caregivers within and beyond IHSS, but without imposing burdensome requirements on family members and other caregivers who don’t need additional training to care for their IHSS recipients.
Implement online timesheets
It’s 2017, and the IHSS time sheets look like they were designed in the 1980’s. They’re complicated and difficult to understand. They waste money on paper and postage that could be spent on providing better wages. Every time the state or federal government requires a change, it costs money to redesign and necessitates creating new documentation. Creating a Web and mobile solution would save hundreds of thousands, up to millions in the long-term. Hours could be added and calculated in the app, preventing mistakes that are common with the current time sheets. A few paper time sheets might still be required for seniors and those without Web or mobile access, but social workers could help those individuals transition to the online system over time.
Improve social worker training and accountability
IHSS social workers should be the allies of IHSS recipients, not their adversaries. They should rely on medical documentation and recipients’ statements regarding their needs when determining functional index rankings. Although it is necessary to ask some personal questions when evaluating, they should be worded sensitively, and recipients’ responses treated with respect. Social workers should be trained to believe and validate clients, unless there is specific evidence to doubt them. If a recipient files an appeal, it should trigger an automatic internal investigation. If it is found that a social worker frequently denies/under-assesses hours for people with severe disabilities, that should be grounds for censure or firing.
Social workers should be given time requirements for returning calls. Urgent calls should be returned within one business day, and others in no more than three. No IHSS recipient should wait weeks for a call back, or worse, never get one at all.
Increase criminal penalties for abusive IHSS registered caregivers
Although the state of California has laws that provide for sentencing enhancements if an elderly person or dependent adult is abused, in my experience, they aren’t always used. I asked repeatedly for dependent adult abuse charges to be filed against the people who attacked me, but it never happened. The law should require that charges be filed under that statute if an IHSS provider commits a crime against a recipient. Most criminals are looking for an easy target, so the prospect of a much longer sentence would help deter them from targeting people in the program.
Create a compensation fund for people harmed by their IHSS caregivers
Since the attack, I’ve been trying unsuccessfully to find an attorney who can help me hold the state of California responsible for their part in creating the dangerous policies and lack of protections that led to me being victimized. In particular, the San Diego County IHSS office needs to be investigated for negligence in not launching an investigation or reporting the attack to Adult Protective Services after I called them. Unfortunately, many attorneys won’t pursue cases against the state, because they don’t think the compensation will be worth their time, and because it’s difficult to file due to strict time restrictions. Therefore, I believe the state needs to create a compensation fund for people who have been injured or suffered serious financial losses due to abusive IHSS registered caregivers. Although many people with disabilities are capable of hiring and monitoring our own caregivers, dangerous people can slip through the cracks, and we need a safety net for when that happens.
The fund would be paid for partially by restitution collected from perpetrators, but there should also be the option to fine social workers in cases of serious negligence, or in counties with a high rate of compensation claims.
My life was wrecked by a pair of criminals who saw IHSS as a hunting ground for vulnerable victims. Sadly, such abuses are far too common. To prevent future cases like mine, IHSS must become a program that treats people with disabilities, and those who care for us, with dignity and respect.
Want to read even more about this topic? Check out Legal Liability: The Case Against IHSS.