(Patrick is also in the CareSpotlight video located on our home page or on our GoFundMe campaign page.)
This is Patrick
He is 46 years old and my big brother. He loves to laugh. He loves his family, friends, animals (especially dogs and cats), music, McDonald's, Coke, coffee, movies (especially the Hulk), and much more. He is loving, kind and funny. Although Patrick cannot say much, he understands a great deal (perhaps even everything). But, he is trapped in a mind and body that make expression extremely difficult and frustrating. Although nothing is "easy" for him, he has always embraced and loved life. Patrick has Cerebral Palsy and is severely affected both physically and developmentally. Patrick is unable to advocate for himself and requires 24-hour total care.
I have been my brother's legal guardian for years and have been actively advocating for him for more than 15 years. My father died in 2001 from cancer and my mother is no longer able to advocate on Patrick's behalf due to age- and heath-related issues. I have made decisions for Patrick including: residential care; housing; day activity programs/workshops; medical care-doctors, dentists, hospitals, and surgeries; physical, speech, and occupational therapies; summer camps and respite programs; nutrition; transportation, and more.
Finding services, programs, and residential options for individuals with disabilities - especially adults - can be very challenging. I have been disappointed by the lack of information available online and quality platforms for families to share their stories and feedback.
Patrick's Journey with Residential Care
Patrick and I grew up together in the same house, but my parents knew that he would need 24-hour total care his entire life, and that we (siblings) would not be able to provide this level of care for him long-term, unfortunately.
In 1992, at the age of 22, Patrick moved into an intermediate care facility (ICF) run by Hattie Larlham in Cuyahoga County, Ohio with nine roommates. This agency provided excellent care for years. Our family did not have to worry much and we saw him all the time. At that time, if there were ever any issues, they were dealt with immediately and it was a healthy, safe and happy environment. It was truly a wonderful place.
However, over time, the care, services and oversight declined, and small issues eventually became big issues - some even significant enough that compromised Patrick's health and safety, requiring state-level intervention. After realizing this care provider organization was not going to change at the very top, I decided to move my brother to another home. But, it's not an "easy" process. It is actually very complex and can take a very long time. While he remained in that home, I looked aggressively for over three years.
The problem in Ohio (and many other states as well) is that there is a shortage of accessible residences for developmentally disabled adults and long waiting lists. Emergency situations of course take precedence. At that time, Patrick was not deemed an emergency.
In Ohio, the county boards of developmental disabilities assist families in this process. But county, nor state, employees are permitted to give their opinion about the quality of care that organizations provide - even when the care providers have been negligent and cited. This is extremely frustrating, especially when you have a loved one who cannot communicate regarding their care.
There are public "provider compliance" records available online via state developmental disabilities websites; but knowing how to access, navigate and make sense of these records is another story altogether. And, not all reports are available, nor are all incidents "substantiated". These reports do not tell the whole story and this is the case for all long-term facilities, regardless of the population. In fact, even substantiated MUI's (Major Unusual Incidents) are not posted or available for families.
Databases are often outdated and many care providers and homes are not even listed. When looking to place a loved one into a home for the first time, or move them from one facility to another (whether this person is developmentally disabled, aging, physically ill, or mentally ill), families/guardians should be able to get a jump start on the process through online information and feedback. This is especially true for those who need to do this from afar or are housebound...often they are not able to investigate options in person.
After years of trying to get Patrick a waiver, someone at Disability Rights Ohio helped me, and Patrick finally got one. I was always told that with a waiver and living in a waiver home (leaving an ICF), that his quality of life would improve - that he would get out into the community more and he and our family would have more input regarding his day-to-day care, activities and general life choices.
However, our journey since has taught us otherwise. And we are still trying to find this "better life" for Patrick.
After those three long years of looking, I found a new home for Patrick - a community/waiver home. I was so happy that I would have my brother so close to where I lived at the time. He was going from a place with nine roommates, to only three. Prior to Patrick moving in, I met with the county and the care provider multiple times - this was over a period of many months. Countless phone calls were made, emails sent and documents signed to ensure all was in place for him to move in - this is a very involved process.
Finally in February of 2015, Patrick moved into his new home run by the HELP Foundation in Cuyahoga County, Ohio and it was a nightmare. I thought I had finally found the perfect place for Patrick, but within the first week of him living there, he was so severely neglected that our family was forced to move him immediately out of the home. It was something we never would have imagined. Patrick stayed with my sister for a week until we could find an emergency respite facility for him to move into on a short-term basis. That meant she could not go to work for that time, and we also discovered that finding a home healthcare company to help out was very disappointing. We talked to several home healthcare companies, and the majority informed us they were "booked" once we disclosed that Patrick was developmentally disabled.
Finally, with the help of our county board of developmental disabilities, we found an emergency respite bed for Patrick at an ICF about 40 minutes from our home. He stayed there for ten months, and the care he received at the respite facility was wonderful. It was so refreshing that he was in good hands for that period of time.
We filed an MUI, and after a county investigation, and the MUI was substantiated as neglect.
In addition, Disability Rights Ohio uncovered a number of serious allegations and substantiated MUI's involving the HELP Foundation and conducted their own investigation. They submitted their recommendation to the state of Ohio that they investigate this provider as well. I still have not heard whether or not that state-level investigation has occurred.
Patrick remained in a respite home for 10 months, and after a diligent search and help from a fantastic county support administrator, on November 2, 2015, we moved Patrick into another small waiver/community home about 45 minutes away run by Northeast Community Care, also known now as Northeast Care Solutions, in Cuyahoga County, Ohio. It was difficult to move him so far, but the many meetings prior to him moving in with this provider were so positive, and everything seemed to be just what we were looking for - so, we pulled the trigger.
Unfortunately, this situation did not go well at all. From the very start, the care provider was not able to meet Patrick's needs (i.e. grocery shopping, implementation of doctor's orders, hair cuts, basic hygiene, and community outings). Bottom line, they were not meeting his needs, nor were they following through on his ISP. They continued to tell us that they were meeting his needs and made excuse after excuse. The agency turned it around on our family and said we were being "difficult"; however, we have kept all the documentation that paints a very different picture - one of neglect. In fact, once it became apparent to the county board that this provider was being negligent, and that Patrick's health, safety and overall well-being were compromised, we were encouraged by the county to file an MUI.
And, immediately after filing that MUI in January of 2016 (again, after the county encouraged us to do so). the provider sent us their 30-day notice to terminate care for Patrick.
The MUI was also substantiated as neglect by the county after a lengthy investigation.
The message is loud and clear for families that have their loved one in a home with a waiver provider: if you complain/voice your concern, you might very well get fired! No family should not have to worry about a provider cutting off services if complaints are made. Who is fighting for these individuals and families in these situations?
After speaking with an attorney with Disability Rights Ohio, I am aware now that this is an issue for many individuals and their families/guardians. Providers that accept certain waivers (the IO Waiver being one of these waivers) have the right to end services at any time, with no reason necessary, as long as a 30-day notice is given.
In my opinion, it is wrong that a care provider can give 30-day notice with no reason at all when they are getting state, county and Medicaid dollars to care for the disabled. They are responsible for caring for some of the most vulnerable people in our society, and this is allowing them to be selective about who they care for, and even fire people/families for complaining. Where is the accountability for these care providers? In our case, there was absolutely no coincidence that it was a retaliatory response.
This is an issue that needs immediate attention in Ohio, and if it is happening in other states as well, then national attention is required. What is even worse in our situation is that they were able to submit their 30-day notice letter while the county was conducting an investigation in response to our complaints.
The good news with these smaller waiver/community homes is that the care providers are not typically also the landlords. There is supposed to be what's called "free choice of provider" where families/guardians in the same house (loved ones sharing house) can come together and hire/fire providers - consensus must be reached.
In our case, that didn't work due to the fact that one of the residents had a guardian that actually worked for this same agency. This is a conflict of interest, but if permitted, then families should be notified prior to moving into the house of the situation. We were not.
So, while the good news for us was that they were unable to evict Patrick, the bad news was that they would remain in the house caring for the other individuals if we decided to stay. While this might sound "easy" to simply find a provider to come into a house and essentially share it with another provider, it is not a desirable situation for anyone involved. Most providers would not take that on.
But, I was determined to give it a try if that meant Patrick did not have to move out into an emergency situation again.
Update October 2016
In March of 2016, another agency, Payee Support Services in Cuyahoga County, Ohio began caring for Patrick in the same house he was living in so that he didn't have to move. This agency was wonderful initially. During the first few months, they went above and beyond our expectations. Truly, they did. We were very pleased and Patrick's needs were met. However, everything changed in late September. There was a house manager that was hired over the summer that we had reservations about, and the agency owner even voiced her concern about him in a meeting. But, we all wanted to have faith in him and believe that he could do the job. Also, our family thought management would be keeping an eye on him - especially because the owner seemed uncertain and voiced her concerns to us. However, to our surprise, that was not happening. The oversight was not there.
We discovered this house manager was severely neglecting Patrick. And, management had no idea about what was going on because they weren't paying attention.
In late September, upon a house visit, our family discovered that Patrick's food in his refrigerator was spoiled and had to be thrown out (about $125 worth). He was afraid to eat and had been to the urgent care just days before. At that point we realized he had probably been eating spoiled food and was sick. We do know from his day program that his lunches were looking bad for many days, including an old McDonald's cheeseburger and fries that day program staff threw out because they weren't sure how old it was and said they would not have eaten it.
Of course, we were very angry this had happened, and we voiced our concern. But, we did it in the nicest possible way because we were fearful of receiving a 30-day notice as we did with the previous provider. In fact, I contacted the county about this incident and they recommended that I file an MUI. But, I told them that I was fearful of the 30-day retaliatory response we might then receive and wanted to work through it.
After complaining about these issues directly to the agency, they did let that house manager go. We felt confident we could work through the problems without filing a complaint. We trusted they would handle it because things had been good for so long. While we were very upset about what happened, we were OK with the idea of moving forward with this provider and giving them another chance. Unfortunately, a week later, I visited the house to discover Patrick barely had any food and there was no meal plan in place according to the direct service professional on shift. He didn't know what he was making for dinner that evening or breakfast, lunch or dinner the next day. He also told me he didn't know how to cook. At that point, I became extremely concerned with my brother's care...once again.
What should have been a nice visit with my brother that evening, instead became a two-hour trip to the grocery store. He needed almost everything. As I was unloading the groceries, I discovered there was a roach infestation in the home. There was Raid spray on the kitchen counter and traps on the counters and the kitchen floor. Staff said it had been an issue for weeks and that the house had not been exterminated. No one had notified me as Patrick's guardian of this issue. They informed me that roaches were also in Patrick's bedroom. Staff were spraying the roaches on site with the Raid spray - even on the kitchen counters where food was being prepared. This was now another health and safety issue.
When I questioned the care provider, they said they "were willing to help" but their hands were tied - that it was a landlord responsibility. I contacted the landlord. They said the two care provider agencies in the house needed to clean better. I argued that the house needed to be exterminated and all the cleaning in the world would not get rid of the roaches - now they were all over the house. I made it clear I would contact the health department if I did not get a firm answer as to whether the spraying would take place. And, that's exactly what happened.
When I contacted the health department, they said extermination should have taken place and would need to happen immediately. I am glad that I did call. And, of course, the same day that I contacted the health department, I received the 30-day notice for services. The message is LOUD and CLEAR: COMPLAIN AND YOU MIGHT GET FIRED.
What a major disappointment this agency was for so many reasons. There were other things happening as well that we discovered that were unacceptable. We received the 30-day notice via email. They weren't even professional enough to call me - as Patrick's guardian - even after my multiple attempts to have a meeting to discuss concerns and try to work things through with them. I was giving them a chance when I didn't have to, nor at that point did they even deserve one.
Patrick will be moving into respite care at the end of this month, and then we will need to find a long-term situation for him before the first of the year. It is very difficult for him - all this change. It is heartbreaking. But I know I am doing my very best as his guardian, and our family is doing our best to advocate for him.
We are well aware that there will always be problems and issues with care - it's far from "perfect" and no one will care for your loved one like you will. It's a flawed system: direct service professionals are not paid enough; there is very high staff turn over in the field; it can be very demanding work. But families should always feel confident to speak out against abuse, neglect or any problems they experience. And, they should be able to count on providers to take responsibility and make the situation better. No family should have to worry about retaliation if concerns are brought up. We should not be afraid to complain or to say that something is unacceptable.
Further, if an agency declares they are unable to provide care/services because they "can't meet the individual's needs", then they certainly should not be telling another family that they are in fact able to meet the very same needs of their loved one.
As our residential system is changing drastically, and more and more ICF's are closing and our loved ones are moving into smaller, community homes, there are many things to consider. There needs to be oversight in all these homes - beyond the house manager - for the sake of all residents. And, especially for individuals like Patrick who have severe physical disabilities and/or the inability to advocate for themselves - there really needs to be more oversight and accountability. The same goes for those individuals with serious medical needs, behavioral issues and/or mental illness.
A house manager should not hold all the cards regarding care and services delivered. Agency owners and top-level managers can't simply place these house managers in homes and walk away. Top-level management need to do more than make a call to ensure "everything is ok". They must show up and see first-hand what is happening.
While community inclusion is important and certainly ideal, it should not come at a cost to the very people it is supposed to support. Higher functioning individuals and their families might feel a little differently about all of this. But, we all are seeking quality care and need to feel confident and secure in voicing concerns without facing punishment by provider.
These years of advocating for Patrick and acting as his legal guardian have taught me so much about the system of developmental disabilities and the serious struggles for individuals and their loved ones. I stand behind all my decisions as Patrick's guardian and sister. I have fought for his rights and will continue to always do exactly that - and nothing less.
These recent experiences involving my brother's care have only reinforced my belief that we need CareSpotlight. I am working very hard to build it for everyone that is facing struggles - whether related to an illness, disease, disability, or age - and require more information in order to make better decisions for themselves and/or their loved one(s).
Of course, there are providers that are doing amazing work every day, and doing it well. And, we need to hear more about these providers too! But simply because an organization once had a great reputation does not guarantee that it always will (and vice versa). Leadership, budgets, and even external/environmental factors can affect, and even change, how these care provider organizations operate.
This is why we need to keep one another informed when possible by sharing our experiences, on top of our own research, and remember that it's imperative to gather as much information as possible about these care and service providers when we are making critical decisions.