"As for me, it's been my whole life. Karen, my Mom, and Anne raised me to be self relent and independent. I was sent to Muscular Dystrophy Summer Camp at age 5 and I remember Mom, who was the camp nurse that year, telling me how to deal with making sure I was taken care of well. Basically, to ask for what I needed and wanted from the volunteer provided for me. I wasn't raised to be embarrassed or ashamed of my limitations. I've seen so many others, born with disabilities or becoming limited later, act or treated as if they are less as people. I've never felt as if I should limit what I want or need. That is something a lot of people have trouble with and it's something in which you would have to council others. A lot of people give up. It IS exhausting to constantly defend and fight for ones personal rights and needs, be it equipment needs or even the clothes you want to wear. And really, in general, the system does not encourage a lot of self reliance. The system, rather, only wants to provide the absolute bare minimum and you have to fight HARD to get a lot of needs met. Each county, city, state and the federal government have different laws, rules and obstacles. A huge part of the system loves the idea of "Warehousing" and limiting people, usually written in as funding limitations. Times have changed and it fluctuates. Some times, the ideal of "Quality of Life" has been the ideal. When politics and public opinions changes, it's all about saving money, usually to the detriment of those who need assistance. And more often than not, those who need help and advocacy do not get it. Case managers and the system in general only do the minimum, due to laziness or just plain over work from a system that is not REALLY designed to maximize "quality of Life." Meanwhile, those who need assistance either do not know how or are afraid to ask for fear of getting nothing at all or suffering some form of retribution. And trust me when I say that retribution does happen. Too often, those who need care get punished for asking for "too much." The unfortunate truth is, those who need help are too often penalized for that need. Like I said, it's exhausting. I know you've heard of the abuses that happen, in nursing homes, in hospitals, as well as in peoples' own homes, whether from lack of training or just plain apathy and laziness. It's difficult to defend one's needs when one literally cannot speak for oneself. And not all care givers, family and friends know how, or frankly, want to advocate or help at all. Sometimes, care givers, family and friends are also just plain tired, sometimes angry. I've heard and seen a lot of horror stories and had a few of my own.
As for coaching clients and their caregivers, you NEED to know every program, funding option, at least basic equipment options, how case management and attendant care options operate, SSI, SSDI, Medicaid & Medicare, section 8 housing, food stamps and/or where to find ALL that information. I would say above all, the client must be informed on what they need. Whether a new disability or a life long one, if you don't even know WHAT your disability IS and all its facets, how can you know what to ask for? Knowing what your equipment needs are and ASKING for them ALL, which usually means Doctor's scripts. Evaluating the living situation is also important. If you cannot get into the bathroom in your own home, changes should be made; move or renovate. I've seen disabled people who only bed bathe, have to wash their hair outside, brush their teeth in the kitchen. It's gross and inhumane, really.
I think my biggest pet peeve is so many people just give up, don't even TRY. So many disabled people feel like a bother to everyone around them and too many ARE treated that way, so they never ask for what they really need or want. Literally as if when your disabled, you aren't allowed, your needs and wants are expected to be diminished. Ever notice the word invalid has two meanings? And it IS difficult, especially when you've been independent all your life, to suddenly HAVE to ask for help. It sucks, but you HAVE to, why struggle when you can make it different, better? I've run into a lot of obstacles, mostly because I specifically do NOT lower my expectations, I do NOT allow myself to be warehoused or minimized. An example? I use a patient lifter, have since I was 12 years old. The Hoyer design was the first, simple and sturdy and I have used that one all my life. About four years ago, mine needed repair, the hydraulic cylinder went out (as they do) and I was told for its age I could not have it repaired. The equipment repair company sent me a replacement, another brand and design. It sucked for many reasons, including that it didn't rise up high enough to get my butt onto my bed, the caregiver had to pull me UP, sort of missing the point of USING a lift. Within three weeks, I had to ask for two replacements because the first one had a wheel break off and the second one also had a bad cylinder. So, with the third of the same crappy design in my house, I asked if I could just order a new Hoyer design. The equipment repair company manager told me, "no, this is all there is, the county contracts with one vendor for one design for all county clients and no one ELSE has ever complained." My response? "Everyone else is either ignorant or lying to you, this lift design is flawed. And this lift doesn't work for ME." I had to show him how it didn't work for me and all he said was, "huh." I decided to ask my Medicare insurance company if I could order the Hoyer design, to which THEY said "sure, with the prescription, you can get whatever you want." So, I did and I now using a Hoyer, brand new, ordered through a different repair company. So, I get what I need and what I know works best for me and at the same time I've developed a reputation for being a pain in the butt. And that becomes the issue for a great number of clients: bullied into taking equipment and services that don't necessarily serve their needs because the system and people therein are either lazy or ill informed. But, squeaky wheel and all that. I've been doing this since I was 18 years old and I can provide more examples if you like.
You are also asking about relationships, barriers and challenges which is a long story, too, of course. I'm 46 years old and I have GOOD, trust worthy friends who I know have my back. It has not always been that way, part of growing up is learning who you can trust and who is going to do you more harm that good in your life. I do my best to NOT depend on my friends for my daily care, though, that is the quickest way to burn someone out and they LEAVE, for good. I have made sure that my daily care services are consistent and dependable and all my friends know this, too. They would, should I need, come running and they have. I make sure my more trusted friends have keys to my apartment. Though, I do NOT tell that to the care giver agencies: they WILL use that against you, makes them lazy because they figure you are covered and they don't have to work so hard. Trust me, that is also from experience. Over all, you HAVE to make sure your friends and family are NOT your main care givers. I've had case managers tell me I do not deserve care givers because I have friends and significant others who should be doing all the work. Wrong. And as for dating, I'm single right now. I've dated on and off, no one has stuck it out. The irony is, I seem to attract people who think I need to be saved & taken care of OR people who want ME to take care of THEM. Either way, it ends, because it isn't at all as they thought it would be, because this is a DIFFICULT life. I am VERY out spoken, independent and sometimes called intimidating because I stand up for myself and also expect people to do what they say. To many people, standing up for yourself is a very bad thing. Gah. Actions, not words are key. And I try not to suffer fools anymore. Been there, done that. As I've said, it's exhausting.
I also can go on about how care givers should be paid a LOT more and that minimum wage should be raised significantly. When you can get a fast food job making more than actually taking care of PEOPLE, our system is broken and NEEDS to change. Everyone you ask will say we should take care of each other but when it comes down it actually doing it, no one wants to PAY for it. You have to fight for your rights and needs, everyone. It also becomes a political issue. I don't know your political leanings, but when I see politicians, mostly the GOP, suggesting that public services such as SSI, SSDI, Medicare, Medicaid, public health care, food stamps, section 8, et al. , should be deeply cut, defunded or privatized, I worry that my care will disappear. ALL of those things should be increased. ALL.
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