Ohio Wages War Against Disabled Citizens and Their Caregivers (part two)

Dear House Finance Subcommittee on Health and Human Services,

Sisters

I am providing you with written testimony today strongly opposing Governor Kasich’s Budget Proposal for 2016-2017 to phase out Ohio’s certified Medicaid Independent Providers for several reasons. I would like to explain to you how this proposal to phase out Ohio’s Certified Medicaid Independent Providers will negatively impact myself, my family, our livelihood, our future, my developmentally disabled sister, her rights, her freedoms, her protections, her life, her future, and most importantly her health, her safety, and her happiness!

My sister is 45 years old and is developmentally disabled, she has been a recipient of the IO Waiver for 20+ years. She has had to endure a lot of pain, abuse, neglect, and inappropriate care throughout her years of being involved in Ohio’s Developmental Disabilities (DD) system, mostly at the hands of Agency Providers. We have spent those same 20+ years constantly fighting for my sister, her rights, her freedoms, her protections, her health and safety, her happiness, her future, and many times her life!

Aside from fighting a broken DD system, we have had to fight to make sure my sister received the proper medical care she deserved and required in order to stay alive. We have been by my sister’s side every single step of the way fighting for and caring for her like nobody else would ever consider doing!!!

-       When my sister had life-saving brain surgery not a single employee, house manager, or administrative staff of the agency provider came to visit my sister during her 2 month recovery process! We were there every single day, sometimes 2-3 times per day!!!

My sister has resided in and received care from many different Agency Providers/ Group Homes all of which have failed to care for her properly! There have been too many times and examples to list relating to the abuse, neglect, mistreatment, and negligent care she has received. So I will go on to explain our latest experience with the last Agency Provider she received inappropriate care from.

She spent months with this particular Agency Provider being medically neglected on a daily basis.

-       There were repeated med errors, including medications not available (as well as missing) and/or she wasn’t given her meds, as well as staff not being trained or certified to pass meds so she was forced to go without them because there was no staff available that could give her the meds she is required to take.

-       Numerous times where she was not fed for 20+ hours at a time, even though the meds she takes require her to eat on a consistently normal basis.

-       She was not taken to nor were many of her needed medical appointments scheduled, including extremely important medical issues that were repeatedly ignored (ex: biopsies for breast cancer, and brain surgery rehab).

As a family we fought the Agency Provider to provide appropriate medical care to my sister, and filed complaint after complaint after complaint with the County and State, which the County and State failed to “substantiate”, and failed to protect her in any manner at all.

-       Then as a retaliatory result of our fighting for my sister the Agency then limited/restricted our (family and guardian) communication with ALL agency staff, the house manager, and the manager on call, and required that we only be allowed to communicate with the Agency’s Director and her administrative staff, even in the event of an emergency. Those actions jeopardized my sister’s health and safety even more so than the Agency’s previous actions.

In addition to the above issues, my sister also endured months of repeated verbal and emotional abuse by the Agency Provider staff and house manager. We would remove her from the home at those times, and file MUI reports with the County Board, all of which were ignored and found to be “unsubstantiated allegations” each and every time we filed a complaint.

-       After the same Agency Provider had 3 unnecessary and inexcusable deaths of developmentally disabled individuals within their homes/ care in less than a 5 month time frame, the State finally revoked the Agency’s certification based on identical allegations (from other families) of medical neglect, verbal abuse, improper investigations/ interviews, destruction/ shredding of documentation/ evidence (by the Director of Nursing), and wrongful deaths, which were finally “substantiated” by the State. The State reinstated the Agency’s certification after 4 months once the Agency simply submitted a plan of correction.

-       This evidence I can point to as the exact reason why the State claims that abuse and fraud is more prevelant among Independent Providers. Unfortunately the State fails to even investigate allegations of abuse, neglect, or any wrongdoing of Agency Providers unless they are forced to do so after multiple deaths at the hands of that provider! Please review the following News Investigation which has documented the State’s neglect, this article also addresses the abuse and neglect of the Agency Provider with whom my sister received her care from. http://www.newsnet5.com/news/local-news/investigations/newschannel5-investigates-neglect-and-abuse-of-ohios-disabled-slips-under-the-radar

As a result of the Agency’s failure to appropriately care for my sister, and the County and State’s failure to protect my sister, we removed my sister from that Agency provider on an emergency basis. Immediately I became a certified Medicaid Independent Provider through the State in order to protect my sister from neglectful and abusive Agency Providers, and the State and County who failed to protect her adequately in any manner at all.

We fought so hard to give my sister the life she deserves, the opportunity to be treated fairly, to be protected, and to be loved. I became my sister’s Independent Provider because of these above reasons. Because not another single human being, agency provider, county board, or entire DD system would fight as hard as we have to make sure she is taken care of appropriately, and has the opportunity to live the life she so rightly deserves!

Governor Kasich’s proposal to phase out Independent Providers in the State of Ohio will take away so many of the things we have fought so hard for my sister for over the last 20+ years. This proposal will force her to have to endure many more years of medical neglect, abuse, improper care, lack of care or concern, and possibly even death by being imprisoned is a system who does not care enough to fight for my sister or any of the other developmentally disabled individuals this system was meant to care for, provide for, and protect!

In addition to my concerns over my sister and her future, this proposal will eliminate the “jobs” of 13,000 up to 23,000 (DODD website list 23,804 certified IP’s as of 3/9/15) Certified Independent Providers (IP’s) in the State of Ohio.

-       That means that these providers will be forced to work for Agencies that they have worked so hard to get away from for many reasons.

o    Mostly due to the fact that Agencies don’t care about the people they are supposed to be serving, nor do they care about their employees.

o   Agencies fail to offer appropriate, adequate, or thorough training, and insist on paying the barest minimum wage possible and then offer employees the least amount of hours available in order to avoid having to pay overtime.

o   That means that a hard working provider who works for an agency would receive $15,500 (gross income) per year.

-  This equation clearly demonstrates that regardless if these IP’s are forced to work for agencies, or if they become unemployed they will ALL qualify for (and require) some form of government assistance in terms of Food, Medical, or Cash assistance in order to help support their own families. Families, meaning it will not only be the providers who qualify for and seek welfare assistance but it will be their entire family that will now be forced to receive government assistance in order to live and survive!

On top of those facts, 16,000+ DD individuals will be robbed of their supposed rights and will now be forced to receive their care through Agency Providers if they could even find an agency that is able to provide services for them.

-       Ohio Department of Developmental Disabilities provider search website lists 12,387 Agency Providers currently as being certified in the State of Ohio.

o   What kind of mathematical equation demonstrates that these Agency Providers could possibly support the service needs and requirements of the 16,000+ developmentally disabled individuals who will no longer be receiving their services from Independent Providers once they are phased out of the system?

o    How could these Agency Providers ever offer the additional 41,260 DD individuals who are placed on Ohio’s waiting lists for waiver services any type of care or support in the future? This type of change or transformation to Ohio’s DD system will make the already broken system crumble and fail.

It is a fact that the real issues behind the Governor’s proposal to eliminate Independent Provider’s (IP) and to move to an Agency-Only service model is strictly based on new federal labor laws, which became effective January 2015.

-       These laws would require the State or the County to now be considered the “EMPLOYER” of the IP, which would force the State/ County to have to pay minimum wage and overtime to ALL IP’s in the State of Ohio.

-       In order to avoid those responsibilities the Governor’s proposal would create a loophole for the State by passing those strict FLSA law requirements onto Agency Providers and/ or self-directed waiver recipients and their families by making those individuals become the “EMPLOYER OF RECORD”.

-       By forcing the waiver recipient/ family of a self-directed waiver to become the “Employer of Record” in order to maintain their Free Choice of Independent Provider this means that the waiver recipient/ family would now be responsible for adhering to strict FLSA laws, and inherit the responsibility of paying minimum wage and overtime requirements, not to mention the IRS requirements of paying taxes that they must comply with also.

o    This is extremely dangerous territory for DD individuals/ families who are unaware of the actual ramifications, because there is a high probability that those individuals will end up facing severe and disastrous consequences as a result.

o   In addition, when the State caps the funding of these individuals at $40,000 per year (which is the max allowed for the SELF Waiver), and the individual requires an exceeding amount of care or even 24/7/365 care, the individual or family as the “Employer” is then going to be responsible for paying anything over that cap in order to comply with the minimum wage and overtime requirements of the federal labor laws. How will they truly be able to pay for the care they require and need?

The State has neglected to be honest, open, or transparent in any way at all regarding this proposal. The State has blamed Independent Providers as being the problem, pointing to us as fraudulent and abusive criminals as their reason to eliminate us as Medicaid Providers.

-       Independent Provider’s, waiver recipients, and families came together to inform each other of this proposal (because the State failed to inform us, or include us), and to work with several organizations in order to raise awareness regarding this proposal, and to share resources in order to speak up and have a voice that would be heard in which we strongly oppose the elimination of Ohio’s Independent Providers. Below are a few resources where you can hear our voices, our concerns, and get to know the real people that will be affected by this proposal.

o   https://www.facebook.com/independent.providers

o   https://www.facebook.com/UO.OCVIC?fref=ts

o   https://www.facebook.com/OhioIPNetwork

o   https://www.facebook.com/groups/231940546995932/

-       After we, as an extremely concerned community, all united and came together to oppose this proposal, the truth came to light, and the real, honest, and transparent reasons behind this proposal were exposed. Here are portions of a news article that was published recently which revealed the truth surrounding this proposal. http://www.dispatch.com/content/stories/local/2015/03/15/state-liability-drives-plan-to-phase-out-independents.html

o   But now, with angry families and consumer advocates questioning that rationale, a top administration official acknowledged on Friday that communication missteps were made. The state's potential liability for independent home-care workers' pay and benefits under new federal labor rules figured just as prominently as fraud in the thinking behind the plan.

o   "We got them to admit that they rolled it out incorrectly," said Gary Tonks, executive director of the ARC of Ohio. "They said the reason was fraud. The real reason is about the Fair Labor Standards Act."

o   Ohioans deserve a "forthright" discussion of the budget proposal, Tonks said. His organization represents people with developmental and intellectual disabilities, many of whom say they receive better, more-reliable care from independent providers than through home health agencies.

o   "We understand the wage issues," Tonks said. "But work with us. Most of our families who have chosen independent providers chose them because of a bad experience with an agency."

o   Administration officials wrongly used language that seemed to pit home-care agencies against independent providers, said Greg Moody, director of Kasich's Office of Health Transformation."That was not really what we're doing, and it was our mistake in how we talked about it," he said. He acknowledged that the state is responding to a new federal labor rule that says home-care workers are entitled to minimum wage, overtime and travel reimbursement.

o   And, according to the Department of Labor's guidance for implementing the rule, states could be considered a joint employer of independent home-care workers and could be responsible for that additional compensation and, possibly, benefits.  Moody said the state has not performed an analysis to determine the size of that potential liability under the new rule, which the home-care industry is fighting in court.

o   Michael Kirkman, executive director of Disability Rights Ohio, said the administration created an environment of distrust and apprehension that was unnecessary by not discussing the plan before including it in the budget.

§  "The department miscalculated the depth of feeling about this and used a justification that was superficial at best, when in fact there are much more complex issues that are really driving the conversation," Kirkman said.

§  "We've not had experience with independent providers committing fraud on the clients we've worked with and represented."  Ohio doesn't want to be in the business of employing home-care workers.

o   But, Moody said, the state wants to create more ways for consumers to be able to choose the people who care for them, including, in some cases, family members.

o   "Parents are passionate about this issue," said Adam Herman, a spokesman for the Ohio Association of County Boards of Developmental Disabilities. "Some of their comments were heartbreaking when we read them. There's a lot of fear out there."

o   The association hasn't yet taken a position on the proposal, but it is collecting feedback from families, independent providers, agencies and others. Of more than 1,000 surveys completed by Feb. 20, respondents were overwhelmingly against the phaseout, Herman said.

I beg you to stop and understand ALL of the actual facts surrounding this proposal which will so greatly impact Ohio’s DD population in such a negative and devastating manner. I beg you to understand where the true problems of fraud and abuse lie within this system, and to fully understand that the majority of Independent Providers do not work for Agency Providers because of the facts that those Agency’s do not care enough about these individuals to actually fight for them, their rights, their freedoms, their protections, their health and safety, their happiness or their lives, instead these DD individuals are just another dollar to these Agencies.

I beg you to take your time to sit down with the Independent Providers to listen to their stories of why they became Independent Providers, and why they do not work for Agency Providers. I beg you to sit down with the developmentally disabled individuals and their families to listen to why they chose to have Independent Providers over Agency Providers, to listen to the stories of neglect, abuse, and horrors that they have been forced to experience in the hands of Agency Providers. I beg you to fully understand the entire DD system, to understand where the abuse and the fraud and the neglect really exists before making a decision that will impact thousands upon thousands of developmentally disabled individuals lives, their families, and their independent providers before deciding whether or not to agree to phase out those independent providers who care so deeply about the individuals that they serve, and that they are willing to fight so hard for!!! I beg you to fully understand the rights that the DD individuals (and community) has fought so hard to earn for these individuals, which they will only be robbed of if this proposal is approved.

I thank you kindly for taking my testimony into consideration, and listening to the voices of the people who were not included by the State in the discussion(s) relating to this proposal! Again I ask you not to approve this proposal to eliminate Ohio’s Independent Providers.

Sincerely,

Andreah Forbes