{"id":958,"date":"2022-07-15T22:40:36","date_gmt":"2022-07-15T22:40:36","guid":{"rendered":"https:\/\/humansofchronicillness.org\/?p=958"},"modified":"2022-07-15T22:40:36","modified_gmt":"2022-07-15T22:40:36","slug":"river","status":"publish","type":"post","link":"https:\/\/humansofchronicillness.org\/2022\/07\/river\/","title":{"rendered":"River"},"content":{"rendered":"
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I grew up in a home where I was emotionally abused. It breaks something when people who love you, also hurt you. This abuse didn’t stop when I became an adult.<\/p>\n

I\u2019d like to share the parts of my story that relate to policy issues like housing.<\/p>\n

I became ill with ME\/CFS when I was a teenager, after an infection. My parents did provide shelter and other practical support. However, it wasn’t clear to me that they “believed in” my illness and they would encourage me to do too much for my available energy, which made my health worse (though later my mom did support me with my illness). At that time, I had no support from doctors, either. I began to have suicidal ideations because I had no support at that time, and no hope that things would improve. I did look at applying for Section 8 wait list (I am in the USA), but I didn’t know how I would pay for my portion of the rent or for things in general (furniture, supplies like soap, my medical expenses, etc.). So I didn’t apply for housing support or for disability assistance at that time. Then the housing wait list closed and remained closed. The one in my city is still closed today unless you can get a referral because you are homeless (and living on the street or in a shelter). This is the case in many cities where jobs and comprehensive medical care and public transportation and other such city amenities are available.<\/p>\n

I eventually applied for disability and about three years later, won my case at a hearing with an Administrative Law Judge. This gave me access to Medicare and Medicaid. At a later time, I qualified for long term services and support (also a Medicaid program) and got a care worker.<\/p>\n

Things at home became very bad and I was subject to verbal abuse and constant snipping at me. I started to wait to go into the main part of the house until someone else could be a buffer between me and my mom. We kept different schedules, so this meant after I had finished whatever I brought into my room, I would have no water or food until this other household member was available, potentially many hours later. Between that and the stress, my health was suffering. But I still couldn’t find a way to move out. I had dietary complications and my mom cooked for me, and I couldn’t figure out how to apply to a wait list (since it was closed, as I learned later). Someone sent me a list of low income and flat rent properties for low income people, but most of the rents even there were more than my total income. Even the lowest one was half my income and required applicants to have an income of three times the rent, which I did not have. Seems like the open wait lists for Project Based Housing in my city at that time were all for elderly people and didn’t take disabled people in those locations. I wasn’t able to get SSI due to living at my parents’ home, even after I began to pay them rent (my case worker suggested this would help, but in my particular case, it didn’t). I can’t remember if the max possible SSI amount was barely 3x the one lowest rent or still not 3x that rent amount. Either way, I couldn’t access housing.<\/p>\n

I began to think a lot about suicide again and also I thought about cutting constantly. I had a health complication and was taking verbal abuse also in ER (presumably due to my ME\/CFS, and\/or my gender). I nearly quit seeking help and let myself die (In addition to ME\/CFS, I had an acute illness at that time). But I did have someone who supported me. And I had a good primary care doctor at that time.<\/p>\n

I wanted to get therapy but in my state, someone who needs help with personal care is considered a “vulnerable adult” and if any mandatory reporter (doctor, therapist, teacher, etc.) found out about my domestic abuse situation (that I wanted counseling for) and made a report, I would not be given an opportunity to decline to prosecute. The reason given for treating vulnerable adults as a child or a necessarily mentally incompetent person is that it’s not very available for a vulnerable adult to move house. While it is true that moving house has many extra barriers for people who need care workers, the better response in my view would be to make moving house easily available to disabled and chronically ill people and extremely low income people. Emotional and verbal abuse are not prosecuted in my county but I didn’t know whether this was different for vulnerable adults or whether there might be a finding of neglect (I didn’t ask for all the help I needed for various reasons). Also any kind of accusation that became known, or an investigation, would have made things worse and I didn’t actually want to cut my parents off altogether, just to move out. Moving out is, I think, how most people deal with parents who don’t know how to be a parent to adult kids. But it’s\u00a0 kind of hard to get therapy for your home situation when you have no privacy and are homebound. I also couldn’t tell my social worker, when I got one, how things were at home.<\/p>\n

At one point I got so desperate for change that I called a women’s shelter and asked questions to see if I could go there. They said a shelter wasn’t an appropriate place for someone as sick as me because “it’s only a place to stay at night; you cannot be here during the day”, as you’re meant to be out looking for a job or something, during the day. I was mostly bedridden at this time. Remember, Section 8 Housing Choice Voucher in my city is available only through a referral from someplace like a homeless shelter.<\/p>\n

I was able to get a wheelchair around this time because of having trouble getting around the house. However, I had needed one much earlier and couldn’t have previously qualified. I’ve been told that according to rules like Olmstead, a wheelchair needed for getting around town should correctly be a covered benefit (although it, perversely, is not). Wheelchairs to get around town are a necessity for successfully living in the community.<\/p>\n

Eventually things worked out so that my social worker found a place for me to go.<\/p>\n

Now I have permanent supportive housing (811 housing) and I can afford the rent. My wheelchair can go through the doors, up the elevator, and into my living room, kitchen, and bedroom. My bathroom is not accessible and I cannot reach the kitchen sink from my wheelchair, but I can walk more now so this is okay most days. It’s a good place to be and I’m happy here. I do still think about suicide occasionally because my disease of ME\/CFS limits my life severely. I’ve still never made an attempt. I also have better medical care. After the statue of limitations had passed since I was taking significant abuse at home, I did look for counseling and eventually found someone.<\/p>\n

I’m interested in a potential opportunity I have in another state, but travel, moving, and being away from my local supports would be difficult for me because of ME\/CFS. My 811 voucher is project based, so it won’t port. If I try to apply for and transfer a Section 8 voucher (because that’s portable with some restrictions) in from an area where it’s possible to get on a wait list, the payment standard is not enough for here (or likely this other state). And also my rent would increase under Section 8 versus 811 housing (so I’d have less to spend on necessities and comfort items, or nothing for those). So my housing solution isn’t a complete solution, but it is a lot better than it was.<\/p>\n

I have heard stories from other adults with ME\/CFS who were at one time living with domestic abuse and who also could not figure out how to move out because of a lack of housing availability, and a lack of long term services and supports (getting a care worker, for instance) and other help to successfully live independently. Sometimes the abuse is primarily because the parents or partner do not\/does not understand ME\/CFS. Sometimes it has more factors.<\/p>\n

This isn’t specific to ME\/CFS, but I’d also like to mention that over 60% of unhoused people have a disability or chronic illness.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"

I grew up in a home where I was emotionally abused. It breaks something when people who love you, also hurt you. This abuse didn’t stop when I became an adult. I\u2019d like to share the parts of my story that relate to policy issues like housing. I became ill with ME\/CFS when I was […]<\/p>\n","protected":false},"author":4,"featured_media":871,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"spay_email":""},"categories":[1],"tags":[],"jetpack_featured_media_url":"https:\/\/humansofchronicillness.org\/wp-content\/uploads\/2021\/05\/marcelo-quinan-u0ZgqJD55pE-unsplash-scaled.jpg","_links":{"self":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/958"}],"collection":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/users\/4"}],"replies":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/comments?post=958"}],"version-history":[{"count":1,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/958\/revisions"}],"predecessor-version":[{"id":959,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/958\/revisions\/959"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media\/871"}],"wp:attachment":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media?parent=958"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/categories?post=958"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/tags?post=958"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}