CANARIES IN THE COAL MINE
On July 1, 2012, 1700 disabled individuals and theircaregivers became "canaries in the coal mine" for more changes on the way for Home and Community Based Services (HCBS) in the state of Pennsylvania. I am one of them. Almost three months later, we are not faring well! Our caregivers have gone weeks without pay, and when they do receive paychecks, they are often incorrect. While many caregivers have demonstrated dedication and commitment, working with no pay for several weeks, at great cost to themselves and their families, some have abandoned their jobs. A news story in August reported one person had been hospitalized and thirty were without caregivers because of these payroll issues. I've been without any worker for six of the last twelve weeks.
HCBS allows elderly and disabled individuals to remain at home rather than being institutionalized. Nursing homes are far more expensive than the HCBS programs that keep us active in our communities. These services not only improve the quality of our lives, they save taxpayers money!
As I struggled to understand the events that led to our current situation, I was shocked to learn that the sweeping changes underlying our current problems, and threatening greater ones for many more in coming months, weren't based on any fiscal analysis. There is no evidence they will save a single dime! However, it is clear that costs will increase dramatically for those participants who are forced into nursing homes when their caregivers must quit due to not being paid. That is the reality we are facing here in PA. Who benefits from this?
Efficient use of state funds to avoid waste is a good idea, but this seems more like gambling with taxpayer money--hoping that short term gains won't be erased when long term expenses are dramatically increased. And frankly, it feels like the state is gambling with our health and safety! So far, the results are dismal, and after researching this issue, I discovered many more changes promising future problems for HCBS--too many to detail here.
Please sign my petition asking Gov. Tom Corbett and Secretary of the DPW Gary Alexander to remedy our payroll problems immediately, and take action to avoid further disruptions to the care of more than 20,000 disabled Pennsylvanians. The requests made in my petition already have strong bipartisan support, and will protect taxpayers, jobs, and those who are at risk of falling through new holes in our safety net.
For more than a year and a half, HCBS providers, disabled rights groups, and state lawmakers from both parties have urged Gov. Corbett and Secretary Alexander to reconsider these changes in what was once a smooth running system, and implement a short term proposal that would allow services to continue as they had been until an effective solution to reduce cost while preserving the safety net can be found. This proposal would not cost the state any extra money. Yet they continued to discount warnings that the very scenario we are now experiencing was likely to happen if these changes were enacted without careful examination. Now lives are in chaos.
Caregivers who haven't quit are scrounging for money to feed themselves and their families, pay their bills and fill their gas tanks, while people like me are left without a caregiver, and unable to find one. Would you take a new job if you didn't know when you'd be paid for it? How many weeks could you survive without any income?
We desperately need our governor to intervene now. The July change continues to be a spectacular failure, yet the state seems determined to press ahead with even more drastic changes in the next few months. We deserve better. Our caregivers deserve better. PA's taxpayers deserve better.
LOSS OF CHOICE IN PA
When I was enrolled in HCBS, I was informed of my right to determine how my services would be provided, and by whom. There were a number of agencies serving my area. I chose the non-profit Community Resources for Independence (CRI), because it was founded and is overseen by disabled individuals. CRI facilitated my needs in a timely, professional and compassionate manner.
I also chose to use the participant directed model of care, in which I hire, schedule, and supervise my own caregivers, while a financial management service (FMS) provider handles my workers' payroll, taxes, and other tasks. As their common law employer, I take on more responsibilities, but the ability to choose individuals I can trust in my home and to schedule workers according to my needs more than makes up for the extra duties and expenses I must assume.
While CRI provided FMS along with my other services, I experienced no problems in communication or processing of paperwork, and my employees were consistently paid correctly and on time, even when CRI was losing money because of reimbursement rate changes concerning FMS. In Jan. 2011, the Office of Long Term Living (OLTL)--which oversees HCBS--altered the way FMS providers were reimbursed, at the direction of the Department of Public Welfare (DPW)--which oversees OLTL. Our FMS providers could no longer cover the associated costs of processing our payroll. Hemorrhaging financially and forced to lay off staff to stay afloat, our agencies demonstrated their commitment to us by continuing to provide quality services throughout 2011, while they negotiated with OLTL to correct the rate imbalance. To their credit, although CRI staff occasionally mentioned they were negotiating with the state and changes may be in store, I never could have guessed from the high quality of service I received that CRI was operating at such a significant loss!
During this time, the agencies providing our services developed a plan with OLTL that would correct the rate problems without costing the state any additional money. Along with disabled rights groups and individuals, they warned OLTL of the problems that could occur if this plan wasn't enacted--problems people like myself are experiencing now.
Yet in Jan. 2012, OLTL not only indicated the desperately needed rate corrections would not be coming, they added further restrictions, and announced their intention to reduce the number of FMS providers for the state. 37 providers offered FMS in 2011, but that number would be reduced to 1-3 by Jan. 1, 2013 (the state was divided into three regions--it was as likely as not that one company would ultimately provide FMS to all three regions), thereby eliminating our choice of FMS providers.
Several sources now say Public Partnerships Ltd in MA will be our new FMS provider. DPW spokeswoman Carey Miller told reporters they were negotiating with this out of state, for-profit company in August. This transfer means many more jobs will be lost--outsourced to another state. It also means if we experience problems like I've encountered since July, we'll have no other option. A few people have managed to get their paychecks by driving an hour or two to reach my current provider, but who will be able to drive to MA when things go wrong? Again, no evidence exists to suggest this will benefit taxpayers in any way, but if those of us who were transferred to a new FMS provider are any indication of what we can expect after the first of the year, it's easy to see how this could hurt our state budget in the end, not to mention all of those who will hit the unemployment lines when their jobs are eliminated.
Normally, changes like these could not have been made without independent evaluation to make sure it was the best course of action, but a law from last fiscal year's budget, called Act 22, allowed DPW to make any changes they chose. No input from those the changes impact, or even from state legislators, was solicited or accepted. No attempt was made to demonstrate that these changes would work. Act 22 has since expired, but the changes made under this law continue to wreak havoc.
Pennsylvania was a pioneer in developing these money saving, life improving services. They were designed with input from the disabled community, who were active in shaping needed changes for decades, and other states modeled their services on ours. This should be a source of pride for our state. Our Application for a §1915(c) Home and Community-Based Services Waiver states, "Pennsylvania is committed to promoting participant choice and participant direction...."
Clearly, that is no longer the case. Many have already given up their right to participant directed care altogether, because they were afraid if they didn't, they'd end up where I am now--unable to assure their caregivers would be paid, and at the mercy of a provider too far away for them to reach when trouble arose. Having experienced problems with agency caregivers not showing up for scheduled shifts when I was served by a different program, and having heard stories of clients being left to spend the night in their wheelchairs when agency staff called off work and their shifts weren't filled, along with tales of workers stealing from those charged to their care, I decided to take my chances to retain control of my own employees. Knowing I have trustworthy, dependable workers is very important to me. I don't want to go back to the days of not knowing who might walk through my door on any given day, or if they'll show up at all!
Not only will more than 20,000 disabled Pennsylvanians have no choice of FMS provider come the first of the year, they'll also lose the ability to have all of their services provided under one roof, or to choose local providers. The newest regulations mean agencies are now forced to choose which service they will provide, since they will no longer be permitted to offer more. Instead of dealing with one agency, we all must deal with at least two. If we are unhappy with our FMS provider, we have no option to change. The new provider will have no competitive incentive to provide quality care. What happened to Pennsylvania's commitment to participant choice?
Of course, those of us who were affected by the July 1 change already understand what it means to be at the mercy of an FMS provider who is unable to meet the needs of its clients! My new provider is two hours away from me, and even though I'm extremely unhappy with them, and haven't been able to contact them since July, I haven't been able to do anything about it. I can only imagine how much worse it could get when my provider is 14 hours away.
After teetering on the edge for so long, when agencies were informed of the additional restrictions, many decided to stop providing FMS services ahead of the Jan. 1, 2013 shift. Their financial losses threatened these agencies' existence. CRI, my old FMS provider, decided to exit FMS early this year. Not surprisingly, most agencies who were still providing FMS were unwilling or unable to accept the influx of clients and the associated costs, since they couldn't make ends meet serving their existing clients. Therefore, CRI continued FMS services until OLTL informed them they found a for-profit company willing to take CRI's clients--Christian Financial Management of Pittsburgh (CFM). CRI and at least three other agencies subsequently transferred their FMS cases to CFM on July 1.
I wondered, if the non-profit FMS providers couldn't cover expenses under the current rates, how could CFM do this? It now appears they couldn't!
Overly optimistic about their ability to take on this responsibility, CFM volunteered for this transfer, and thousands are still paying the price because CFM was unprepared. Missing paychecks and a malfunctioning phone system (I've waited as long as four hours at a time without anyone answering my call, as the automated system tells me my estimated wait time is five minutes or less) are only two of many problems I've already encountered with this company. The disruption in services we have encountered has become a nightmare, and raises alarms about what will happen when some 22,000 people are also transferred away from the smooth-running agencies who served us well, to an out of state for-profit company.
When I became aware of the payroll problems after my caregiver missed her first pay, I asked my service coordinator if I could simply switch to another FMS provider. She told me few other agencies continued to offer FMS, and those that did weren't accepting new clients. More recently, when I spoke with OLTL, I was told this wasn't true; if I wanted to switch FMS providers, I should ask my service coordinator for a list of providers serving my county, and I would have many options.
My service coordinator sent the list promptly when I requested it. There were only nine FMS providers listed besides CFM and CRI, including another I recognized as one of the agencies who transferred clients to CFM on July 1. There were a couple of agencies I was unable to reach, but as my service coordinator told me, all of those who answered or returned my calls are either no longer FMS providers, or not accepting transfers. At this point, it appears those currently assigned to CFM will be stuck with them until the first of the year. We had heard we might be switched to the MA company as soon as Oct. 1, but when I called OLTL, the woman I asked about this insisted that both the Oct. 1 date and the MA company were only rumors, and that we would ultimately have "at least three" FMS providers to choose from. Of course, that contradicts all of the information I've found in researching this subject.
Confusion and misinformation continue to make a difficult situation even harder for those whose lives have been turned upside down by this situation. We didn't know what to expect when we were transferred to CFM, and we don't know what to expect next! The only thing that is clear is that we have already lost our right to choose FMS providers who meet our needs, and more changes are on the way.
MY EXPERIENCE SINCE JULY 1
I like to employ two caregivers, so that if anything should happen to one, I still have the other. Unfortunately, in the last few days of June, one of my workers quit, and the following day, the other one was seriously injured, so I found myself without any help as this change was taking place. I was unable to hire anyone for three weeks, due to problems in communicating with CFM.
A family member from out of town was able to help me shower and take me shopping while she was here to attend my aunt's memorial service. Others pitched in to help me when they could. I've been sick since early March, and when my condition worsened suddenly, I couldn't get to my doctor's office in a neighboring town. I had to take a cab to the emergency room. This is not the sort of thing I would normally do, as I'm well aware of the higher cost of ER visits, but I had no other option. I should never have been without a caregiver so long, but there was little I could do until I could complete the needed paperwork to hire someone.
Although I received a letter from CRI, postmarked May 22, informing me of the impending change, I didn't receive paperwork from CFM, which I was required to complete and return for myself and my employees, until June 28. When my paperwork did arrive, it was incomplete. I requested the missing forms from CFM that day. Following that conversation, I experienced great difficulty contacting CFM. Their phone and computer systems, as well as their staff, seemed to be overwhelmed.
Many days, I was unable to reach CFM at all, wasting hours trying to get through by phone. When my calls were answered, I reached the same woman repeatedly, who was unable to answer my questions and told me a supervisor would call me back. After more than a week of this, she assured me she would personally have someone call me the same afternoon. India Christian, President/CEO of CFM, was distracted and rude during that 40 minute phone call, more than half of which I spent on hold. I was only able to ask three questions during that time. The third time she put me on hold, someone else picked up after about ten minutes, telling me India had an emergency meeting and someone else would call me back. That call never materialized, either.
Ultimately, it took three weeks, dozens of calls, and countless hours to receive some of the missing forms (portions of W-4 and I-9 forms were still missing, but I was able to find them online) and to have some of my questions answered. They told me to ask my remaining questions once I was assigned to an agent, but I didn't know who my agent was until two weeks ago, and when I call her number, her voicemail is always full. I was told not to complete or return over a dozen of the forms I received in the mail, and the instructions I was given for the I-9 directly contradicted those on the form itself. Two different "new hire" forms were among those I was told not to return. I had to repeat that I was hiring new workers three times, while the woman helping me kept telling me the forms were only for new employees, before she comprehended what I was saying and agreed I should return them. She was completely unfamiliar with these new hire forms, so she guessed at what I should do.
I should note that when I received similar paperwork from CRI upon my enrollment, every place that either I or my employees needed to complete or sign was color coded in highlighter to make the process simple, and the few questions I had were answered promptly and clearly. I experienced no delays and was able to start my new employees as soon as I could hire them.
I completed everything exactly as instructed by CFM, with the help of the I-9 form I found online, since the woman who answered my questions about the paperwork apparently didn't have the list of acceptable forms of ID and their categories for the I-9, either. She obviously didn't know what I meant when I asked her about that, so it seemed easier to find the information myself. I hoped she was a temp employee, since she was less familiar with such forms than I was!
Finally, I was able to hire one new caregiver, and I thought my problems with CFM were over. Once my paperwork was received and my agent assigned, I mistakenly believed, things would go smoothly. Things were looking up!
Others I was ready to hire during the last week of July and beginning of August suddenly lost interest in the job. I now suspect they knew something I didn't yet--most caregivers for participants transferred to CFM hadn't been paid at all since July 1!
At no time during my conversations with CFM staff members in July did any of them mention payroll issues to me. I discovered the true extent of the problems at CFM only after my newly hired caregiver failed to receive her first pay on August 9. Since that time, I have been unable to reach CFM by phone at all, even to leave a message--a problem encountered by everyone trying to call them. Emails and postal mail are not acknowledged. My new worker continued to both fax and mail her timesheets--which are extraordinarily difficult to complete--to CFM each week, but still, she wasn't paid.
My caregiver and I made calls to our state representatives' offices in August, who offered to help with faxing timesheets and information to CFM. OLTL also took our info. At least four separate agencies/individuals passed our information on to CFM, and still--no pay for my caregiver, and no contact from CFM. CFM had called me once, shortly before the first missed pay, but the phone connection was so poor, I couldn't understand the caller's name, let alone the purpose of the call. I couldn't return the call anyway, since I couldn't reach CFM, even to leave a message.
After six weeks without any pay, my newly hired caregiver quit working for me. Since I'd been unable to find anyone willing to take my other position, I was again without any help.
About the time my worker missed her first pay, I received a letter, very similar to the one posted on CFM's website, apologizing for delays in pay. Included were new forms, and instructions for participants to record missed pay on these forms, and to keep them handy, as CFM would be calling during the last week of July (which had already passed) to collect this information from us. I filled out the forms, and continued trying to reach CFM myself once or twice a week, but they didn't call me.
Instead, CFM called my caregiver on a Saturday night, Sept. 1, to get the hours she had worked from her. Then on Sept. 7, they finally called me to verify her hours and other information. They claimed not to have her W-4, which I mailed to CFM along with all of my other paperwork in July. The woman who called told me CFM was under a "mandate" to get all past due pay out that day. Although my employee had completed forms for direct deposit, I was told that everyone was being paid by paper checks instead. Since my worker's final pay wasn't due until the following week, she told me they would be sending out the first five checks, and the last would be sent on the correct day.
On Sept. 13, my caregiver finally received paychecks in the mail. Instead of five, she got seven, including the final week's pay, and a duplicate of another week. Both her first and last names were incorrect, and her street address as well. This was particularly odd, since both she and I had confirmed all of this information with CFM when they called us, and they had it right both times. Because there were so many mistakes on the checks, her bank refused to accept them. Unable to contact CFM, I called OLTL, who instructed us to void and return all of the checks, so corrected checks could be reissued. She finally received the correct number of checks with the correct information on Sept. 19. This time, CFM failed to remove the voided checks from her year to date earnings. Once again, we were unable to reach CFM, so I reported the problem to OLTL. We were instructed by OLTL to fill out yet another payroll form, and have this sent to CFM from a local legislator's office. I have no idea if/when this will be resolved.
It appears CFM didn't--and possibly still doesn't--have enough money to cover their payroll costs. In a timeline of the events of the transfer of participants to CFM, CRI notes they were required by OLTL to transfer $500,000 to CFM on Aug. 2 "to assist with payroll funding." This timeline also notes that CFM was provided with required enrollment information for participants on June 8, and on June 26, was also given all of the caregiver information necessary to set up payroll, along with worker's compensation information for participant employers (each of us carries our own worker's comp insurance for our employees).
When I was first told by someone from a legislator's office in August that CRI had provided caregiver information to CFM, I was alarmed! I was afraid if CFM used this information, it would only make matters worse for me, since those who worked for me while CRI was my FMS provider hadn't worked for me since the switch and I'd never received any confirmation from CFM that they had received my new hire's paperwork.
I was lucky enough to have two shifts left with my employee after she let me know she couldn't keep working any longer without pay, so I used my final days with a caregiver to prepare for being on my own again. In the long months before I was approved for HCBS, I learned how to get by shopping only once a month with the help of a friend, so I used what I had learned then to help me stock up on groceries and other supplies. Budgeting my limited resources was tough, since I had to buy everything for the following month early. Last minute errands like shopping and picking up prescriptions and medications exhausted me, and I spent the next few days in bed. For over three weeks, I've been stuck at home alone, aside from a trip to the hospital for a previously scheduled procedure.
After my most recent caregiver stopped working for me, I waited as long as I dared to post my job opening again, hoping that things might be resolved before I was ready to hire someone. It's a challenge explaining to a prospective employee that I don't know if they will be paid regularly! I just interviewed a great candidate, and once I check her references, I'll probably want to hire her. I can only hope that she will be able to accept.
According to her doctor, my injured caregiver may be able to return to work in about four weeks, but I can't promise her she'll be paid regularly either. She's been with me from the start, and has made my life so much easier in many ways, but I know, as the sole breadwinner for her family, she won't be able to survive long without regular pay.
I'm caught in limbo, not knowing when I'll have a caregiver again, or how long they'll be able to keep working for me, since the payroll and communication problems with CFM have still not been resolved. Even if CFM does make much needed improvements soon, I have that switch to the MA company hanging over my head now, and the other changes I've discovered in my research are also of grave concern to me. The agencies providing our other services are at risk from these changes as well, and it appears some of our caregivers may even see a decrease in their pay rates soon.
Our caregivers don't make much money. Mine are paid less than $10/hour, with no benefits like sick time or health care. Most of those I've employed work multiple part time jobs to make ends meet--many working more hours than most full time jobs require, with no overtime pay. The caregivers caught in this scenario don't qualify for unemployment or other help they would be eligible to receive if they weren't working at all, even though they aren't being paid. They are at risk, too!
Having worked in social services myself before I became disabled, I've seen problems related to a reduction in funding like this first-hand before. When budgets cuts for a particular program reach the point where non-profit agencies can no longer make ends meet, the losses impact other programs within that agency, and clients being served by all programs suffer.
When their contract for the program expires, the agency bows out to save their other programs, and another agency tries to make the underfunded program work within the new parameters. The new agency and it's clients then suffer until their contract expires, and the problem moves on. It continues to be passed like a hot potato from one agency to the next, and the effects of that one underfunded program ripple out to affect many people.
All along the way, the clients served by the underfunded program are forced to move from one agency to another, working with new staff members, who are inexperienced in the program and working a heavier caseload in an attempt to save money, so the quality of care the clients receive is far below what they would experience with an agency with years of experience and fine tuning of the services offered. Some clients ultimately end up needing more services as a result of the decline in quality of care. This is the scenario that's already begun to play out for HCBS in PA.
WARNINGS AND SUGGESTED COMPROMISES IGNORED
Throughout 2011, service providers, along with disabled rights groups and individuals, warned DPW and OLTL that the HCBS system in PA could collapse if rates weren't adjusted so that FMS providers could cover the costs of processing paychecks, from building leases and utilities, to payroll staff, to paper and ink to print checks. They developed a Release Agreement with OLTL that would give providers access to money to cover these costs, but OLTL has refused to implement that plan, even though it would require no extra money. One of the most amazing things to me about this situation is that the needed money is already there! Since the providers aren't able to use it where they need it, it sits untouched, while the system that provides HCBS crumbles, and program participants, providers and caregivers suffer the consequences.
After more changes were introduced in Jan. 2012, many of our state legislators also asked that the proposed Release Agreement developed by providers and OLTL be implemented, and called for an analysis of the fiscal soundness of the proposed changes and the impact they would have on participants like me before moving forward with these new regulations.
In February, PA House Human Services Committee Chairman Gene DiGirolamo (R-Bucks) sent a letter to Gov. Corbett suggesting this plan be used to prevent disruption of care. "The agreement would remain in effect on an interim basis until new rates are set for the remaining program components, namely Financial Management Services, Service Coordination, and Personal Assistance Services," he said, urging the governor to adapt the Release Agreement to release state funds for this purpose. He was referring to a decision from the federal Centers for Medicare and Medicaid Services, which clearly stated that while federal monies could not be used in this way, the state could use its own portion of the funds for this purpose, once "all needed direct services are paid...."
The Northwest Caucus of the PA House of Representatives, sent a similar letter to the governor in April, urging implementation of the Release Agreement, and more careful consideration of the plan to reduce the number of FMS providers. "That decision is a far reaching one," the letter says, "and it's merits must be discussed, and the best interests of care recipients must be paramount. In the mean time, the rate imbalance is bleeding these organizations dry, and thousands of Pennsylvanians who rely on their services are at risk." It further states that the only thing needed to implement the Release Agreement is the approval of the administration. That letter was signed by thirteen lawmakers.
On May 3, 2012, the Human Services Committee held a Disability Services Hearing, to " hear from advocates, consumers, providers, and statewide
associations on the impact of the policy and systems changes." Transcripts of testimony given that day can be found at the link below. Many predicted the problems we are seeing today!
DiGirolamo wrote a second letter to the governor following the hearing in May. "Democrats and Republicans alike agree," he says, "that DPW's FMS initiative will result in the loss of critical, life-sustaining services, and will also result in massive layoffs across the Commonwealth." He goes on to say that the "most troubling" aspect of this situation is the lack of any evidence that this plan will save any money, which should be of primary concern. "Instead, DPW's representatives simply shrug that assertion off, and blame the proposed change as a 'mandate from CMS', which is a dubious contention at best. Lacking any other information from DPW, it is impossible for us to conclude that this plan will do anything but cause widespread disruptions in service, chaos for consumers, an overall reduction in care, a return to the trend of costly institutional care and a loss of employment for potentially thousands of people." He asked Gov. Corbett to direct DPW to "put a hold on moving forward with this plan until the General Assembly and the pertinent committees be given time to invite each and every stakeholder to the table and fully vet the plan."
Also in May, State Senator Patrick Browne (R-16), Majority Whip, sent a letter to Gov. Corbett about this matter. "Without doing a fiscal analysis of restructuring the FMS system..., how can we justify such a major change to Pennsylvania taxpayers and home care consumers?" he asks. "In addition to the cost issue, such a fundamental change to the FMS system must be predicated on the impact it has on consumers, providers, and workers in the consumer-directed homecare system. If the consolidation of FMS services threatens services for the disabled and the elderly, as many stakeholders argue that it does, cost savings is not a good enough reason to dismantle the system." He then asks the governor to do two things before proceeding with this plan--conduct a fiscal analysis of the cost savings to be had from FMS consolidation, and conduct an analysis of the impact this change would have on caregivers, service providers, and participants like me.
THE COST THUS FAR
No one knows yet what the final tally will be for the July 1 transfer and the ensuing problems.
In the statements made during the May hearing, we're informed that hundreds of service provider employees were already laid off, and since more providers have now exited FMS, we know there have been many more. In one news story, I read about a disabled participant who lost his job because of the changes. Who knows how many more there are like him?
Since late July, there have been reports of DPW employees and sub-contractors working at CFM to clean up the mess. They claim they are "working around the clock" to solve the problems, and considering the Saturday night phone call to my former caregiver, and reports I've heard of recent weekend contacts, we can assume overtime costs continue to accrue.
Participants and caregivers are considering lawsuits against the state and CFM over the missing pay and loss of care, and there is talk of a class-action suit. That can't be good for the state budget.
In a letter to Secretary of the DPW Gary Alexander, dated Aug. 29, 2012, PA's Auditor General Jack Wagner asked Sec. Alexander to resolve the payroll problems immediately, and says, "the lack of appropriate administrative action is unacceptable to those providing this valuable service."
"Please provide me with answers on how and when these personal care attendants can expect to be paid for services rendered. This request is being made to avoid the need for a formal investigation and/or audit," Wagner's letter concludes. Investigations cost taxpayer money, too. News reports say that some caregivers have already contacted the Department of Labor about the missing pay.
Then there all of the phone calls being fielded by service providers, OLTL, and state lawmakers' offices, along with all of the time and resources they have devoted to helping caregivers get paid. The problems created by the CFM payroll debacle keep rippling outward. If I was forced to visit the ER, there are probably others. I'm sure I'm overlooking other financial impacts of this situation.
The human cost may never be known. While I did see a news report that said one person had been hospitalized and 30 were without caregivers, to my knowledge, no government agency is collecting information on the number of us who are actually without caregivers as a result of the pay issues. I asked my service coordinator if this was being done, but she was not aware of any such effort. Wherever the number in that news story came from, I'm confident that number did not include me. If I'm not being counted, how many more might there be?
Some participants employ live-in caregivers. These participants, as well as all of the caregivers and their families, are now at risk of being evicted from their homes. Caregivers have been racking up debt due to the missing pay. Parents couldn't buy clothes and school supplies for their children. Many participants have been giving their own money to their caregivers to help them to be able to continue to work. I did that myself.
Relationships are strained by the stress. I've heard stories of partners of caregivers being suspicious of their claims they weren't being paid. I know that my own newly hired caregiver worried that I was deceiving her when she didn't get paid. The stress we are all under is certainly taking its toll on us, and those who care about us.
There are also those who gave up their right to participant-directed care to avoid the transfer to an unknown FMS provider. So far I've heard no reports of them experiencing difficulties, but I'm afraid that may change over time. Their caregivers, who are now employed by various agencies, may become dissatisfied when they are required to work for other agency consumers. Who will replace their caregivers if they become sick or injured or quit? Participants who switched to the agency model of care were able to keep their old caregivers in most instances, but they won't be able to choose the next person who works for them.
WHY WE NEED YOUR HELP
The people affected by the July transfer to CFM, like those who will be affected by more changes by Jan 1, are spread across the state. We tend to be isolated from one another, so banding together to fight for ourselves has been extremely difficult. Very small groups of us have found one another, but we remain disconnected from most of those who share our struggles. We don't know each other, and don't know how to find one another. I worry many will never see this petition.
We need concerned people both in and outside PA to join with us. Please get involved by signing and sharing this petition wherever you can. A few minutes of your time could make all the difference in our lives! Thank you so much for your help!
Anita Roland started this petition with a single signature, and now has 222 supporters. Start a petition today to change something you care about.