I’ve posted about this topic numerous times here from different angles, and when I was in various emotional states. Today I hope to step back and concisely say how I feel in the hopes that it will inspire good quality discussion and brainstorming possible creative solutions.
The topic is: the tragedy of so many people with disabilities in very poor living situations. And what can we do to change this?
When someone thinks about services for people with various disabilities, particularly autism the focus is on children. Schools, different therapies and products ETC are commonly featured in the news or other media. So when people think of a person with a disability and the support circle around them, often they think of children. Children who live with their parents who are trying their best to access the best treatments products and emotional support for themselves to help their children basically grow up to not be disabled. To fit into “normal society” as much as possible. This is another topic for another post, but I think an underlying piece of the issue of what disabled people face as they hit adulthood. Many believe and expect maybe subconsciously, that what’s available for children if it’s used correctly and everyone works hard enough, will minimize or eliminate the need for services for adults. Or less comprehensive services.
Don’t get me wrong obviously children with disabilities need services that fit their challenges. But I think there needs to be the thought when talking about people with disabilities, to include the fact that they’ll grow up and regardless of what outsiders have tried to push on them will still have their disability. To one degree or another. They may have changing needs, and yes some may not need any services. But that should be their choice not something forced on them because there are no other options or every single agency is pushing complete independence (I.E) no professional help.
So what happens when a person with a disability reaches adulthood? This would be 18 or 21 depending on the services. They can continue to live at home, receiving whatever is available on the adult level of services for those living with family. They could live in a group home, have services providers come into their home, or live with friends or significant others. And perhaps other configurations of these situations.
For myself as someone who’s blind and has psych disabilities I lived with my parents until I was twenty. I then lived in a college dorm but my psych disabilities very much interfered with my quality of life there. I got my degree but often daily living needs like being sure I went to meals, hygene, getting clothes washed ETC did not happen or happened sporadically. I was also quite isolated. So I moved then to an assisted living community in Chicago for the blind specifically. They basically lied saying that they had services to work with those with multiple disabilities, including psych and they don’t. So then after my psych issues became my primary concern I moved to a nursing home that specializes in these issues. Where I continue to live.
Many probably have a similar story of going from living situation to living situation as their needs change, or sometimes they are forced out of or into aa living situation due to lack of resources either emotional, financial or outside supports.
I will now discuss some of the struggles that I’ve personally faced or that those that I care about face when trying to find a living situation that works for them.
Many people very much value living “on their own.” In their own apartment/ house with friends or a significant other. In an ideal world I so wish that everyone who wanted this option could pursue it and have whatever needs they had in order to be successful met. Many people who choose to live on their own do need help with a number of things. Their disability/s could make daily living tasks such as personal care, cleaning house, going out into the community, preparing meals ETC extremely difficult, or not doable at all, or not doable some of the time. If someone has these needs then it’s something they always have to think about day by day. They have to worry about things like getting enough food, having a clean living environment and generally whether they will have any human connection or not if they’re unable to access the community.
Many say the answer to this is to apply for assistance with agencies that provide home healthcare, personal care attendance or other names for people who come in and assist in whatever needs to be done. I have not personally worked with such people. So I would love the perspectives positive or negative of those who have had contact/ used any outside caregivers. I will say I’ve heard very mixed reviews, honestly slanting towards the negative. People will say well people are more likely to complain about something then tell a positive story. I don’t believe this is true. As yes I have heard positive stories of great caregivers. That come in consistently, build excellent relationships with people and are a huge support. But the story usually ends with “and then this person left and now I have a really bad caregiver, or many that don’t come when they should etc.” Some people haven’t even had the experience of good caregivers. They’ve reached out with their obvious vulnerability and trust these people with their lives literally, and at times have been abused or ignored. This breaks my heart that someone would have the courage to say I really need help with whatever. I want to not have to worry about these basic things I want to concentrate on just living my life. Then they get treated this way? Situations like that call for much better screening training and supervision of these professionals, and likely higher pay. I have a friend as well who worked at an agency that advocated for outside caregivers. They told me that the people in these jobs often were not very trained and frustratingly though through no fault of their own, did not have a good command of the English language. This makes it challenging for people who’s disabilities make communication difficult in the first place. Again I welcome any comments about in home support.
To list the problems that I see my friends who I deeply care about face every day: Lack of personal care being attended to, lack of food either because of poor money management or access to being able to go to a store
Not having a clean or clutter free living environment
Lack of access to needed medications
Lack of social connectionand emotional support.
Being isolated and in extreme physical or emotional pain with no human connection.
Lack of access to needed healthcare appointments.
These are just the things that come to the top of my head as I consider my friend’s situations. The scariest circumstances for me to witness are when someone’s personal care is neglected/ unable to be addressed, food and meds. But the worst for me is the isolation. To be dealing with things like severe chronic pain/ neurological disorders, severe depression, panic attacks, PTSD, sensory processing disorders ETC and to be alone. I hear about this happening and just wish I could wave a magic wand and get them the solid and compassionate support they need. Or give the head of the agencies supposedly responsible a good talking to!
Another level of care involves the system of group homes/ assistive living. Again these options vary by geography, and availability of funds as well as disability. A big issue for many facilities in certain areas is lack of license and oversight. I’ve heard of many places where anyone can say they’re running a group home just to get money. They have no training, no checks to the house/ seeing about quality of food, environment ETC. And they take vulnerable people and just get their money. People are often abused in these settings suffer from malnutrition and generally emotionally traumatized.
This gives the group homes that are doing well a bad reputation as many feel that all such places are “instutional” abusive and in it for the money. This is not true. However I feel that the whole world of group homes/ care homes needs major reform. So that anything that’s out there is solid in training on the various disabilities they work with, nutritious food, a structured routine with staff that genuinely want to assist people in living and not just minimally surviving.
The problem I and others have found with the assisted living world is that the majority is for those over sixty five. Having a community where people have their own apartments where they could live with a friend or significant other, but with the security and physical safety of knowing that the needs listed above would be provided for, seems to me an ideal option for a lot of people. Unfortunately as I said there is just so little available. Another barrier is that almost all the places I looked into even for those over sixty five, clearly state they don’t take anyone with psychiatric disabilities. That rules out a huge chunk of the population that have multiple disabilities that include mental illness. At the very least that needs to change. However I also feel there needs to be some way to work with the under sixty five population that would benefit from this living arrangement. And to work to make them truly inclusive emotionally, physically and mentally supportive. They then would be collaborative safe spaces.
Obveously on these two levels of living situation there is so much work to be done, to even begin to dialogue on options. So much depends on financial aspects which I have no knowledge of. I do know that for whatever reason certain disabilities get more funding for certain things than others. As well as that across the board everything is being cut. That being said is there a way to look to our own community as a whole, and commited allies to find creative solutions? Could we as people with various disabilities form friendships and connections, but also go deeper? Explore each other’s strengths, needs and growing edges. See if there isn’t a way to create a interdependent living situation where all benefit. And for those nondisabled people, is there a way to think of people with disabilities as individuals, who need to lead lives of their choice as much as anyone else? Rather than saying it’s someone else’s responsibility saying there’s no solution or just ignoring the problem, could you take a moment to consider how you can be of help? This doesn’t mean moving your disabled friends into your house though you could. It could be bringing food by at certain times. Making a routine of calling a person daily at specific times, being an emergency contact if possible or filling in if a care provider flakes out. Going to someone’s group home and doing your own assessment of the situation. And mostly sitting down with that person and letting them tell you what they want in life, what their challenges are and try to work on building that life.
I hope that I’ve said what I’m feeling and thinking in a way that starts discussion and provides food for thought. I’ve tried to put all my complex and often extremely emotionally driven thoughts into something concrete. Which is challenging for me. I spent a long time last night thinking about the title, I’ve erased and wre-written things which I rarely do on my posts. I really am hoping this can be the foundation of something. I realize it won’t be earth shattering but if one person sees this and views a disabled person who is living alone, in a group home, or doesn’t have a solid living situation in a different light this post will have done it’s job.
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Matters to Sam 