In the early days of AIDS epidemic a grassroots organization called the Gay Men’s Health Crisis (GMHC) was formed. They did incredible work for patient advocacy - including devising a “buddy system”. A 🧵 on how a similar system could assist disabled & Covid conscious patients /1
Early HIV/AIDS patients faced tremendous barriers to care. The disease was poorly understood and originally named GRID (Gay Related Immune Deficiency) and as a result there was rampant discrimination against gay men. /2
In many cases even doctors & hospitals would deny treatment - and men were left to die at home with only their partners to care for them (many of whom were sick themselves). The GMHC was formed and in 1982 instituted a volunteer “Buddy Program”. /3
It was designed to provide support to people with AIDS - everything from housecleaning and meal preparation to friendship & company. One of its most critical purposes was helping patients get to the hospital & medical appointments. /4
Volunteer “buddies” were trained to provide support before, during and after appointments. Given the amount of misinformation and stigma attached to HIV/AIDS - having someone to advocate for you & protect you from healthcare neglect was invaluable. /5
Buddies also helped AIDS patients who became too sick to leave their homes - whether with housecleaning or food delivery or simply being a safe person to provide companionship. These early volunteers helped fight the stigma attached to HIV/AIDS. /6
The brilliance of the program was that it recognized the unique need facing AIDS patients. These were young & healthy men struck down in their prime - without family support systems. Their lovers & friends were also sick. Without this program they had little to no help. /7
Disabled people have been saying for years that hospitals can be unsafe places & that having an advocate with you is one of best things you can do. Unfortunately many disabled people have no one in their lives that can fill that role & professional advocates are expensive. /8
The Covid pandemic has only further exacerbated a problem that has always existed. That disabled & marginalized people - especially those without family to support them - often suffer mistreatment at the hands of medical professionals. /9
They aren’t always in a position to advocate for themselves and when they do - they can be labelled difficult or anxious which negatively impacts their care. Covid has added an additional layer of complexity as many disabled patients fear contracting the virus in hospital. /10
We are now starting to see the negative effects of the dropping of mask mandates & Covid precautions. Patients are reporting being accused of anxiety, discharged from care & even placed on psychiatric hold for trying to get HCWs to mask. Hospital acquired Covid is on the rise /11
In addition many disabled & high risk patients are housebound and only go out for medical appointments. When they become needlessly stressful it can be very hard on a person’s overall wellbeing. Having a kind & like minded person to accompany you could provide a big lift. /12
I would love to see an advocacy or volunteer organization try and leverage the fantastic work of the GMHC to create a network of Covid cautious, disability aware allies who would be open to assisting patients with medical appointments & care at home. /13
They would be volunteer programs that could be made available to anyone without family or friend support & who can’t afford to hire private help. Like GMHC training would have to be provided - but they proved programs like this can be a huge success. /14
If you’re aware of any community level program like this - please reply so I can amplify. Additionally if you would be interested in participating please drop a comment. Perhaps we could start a hashtag to see what support is out there for a program of this kind. /15
The disability community & Covid cautious are a compassionate & well informed group of people - together I think we can make healthcare safer for everyone. /16
If you want to learn more about the GMHC’s “buddy program” I highly recommend resources like POZ. (Alt text in image & continued in next tweet) /17
“Back in 1985," Rindler recalls, "the need was for concrete help-like doing housekeeping-but today it could be going to the movies or a café.
For someone isolated and feeling forgotten, just leaving the house improves mental health.” /end
In the early days of AIDS epidemic a grassroots organization called the Gay Men’s Health Crisis (GMHC) was formed. They did incredible work for patient advocacy - including devising a “buddy system”. A 🧵 on how a similar system could assist disabled & Covid conscious patients /1Early HIV/AIDS patients faced tremendous barriers to care. The disease was poorly understood and originally named GRID (Gay Related Immune Deficiency) and as a result there was rampant discrimination against gay men. /2In many cases even doctors & hospitals would deny treatment - and men were left to die at home with only their partners to care for them (many of whom were sick themselves). The GMHC was formed and in 1982 instituted a volunteer “Buddy Program”. /3It was designed to provide support to people with AIDS - everything from housecleaning and meal preparation to friendship & company. One of its most critical purposes was helping patients get to the hospital & medical appointments. /4Volunteer “buddies” were trained to provide support before, during and after appointments. Given the amount of misinformation and stigma attached to HIV/AIDS - having someone to advocate for you & protect you from healthcare neglect was invaluable. /5Buddies also helped AIDS patients who became too sick to leave their homes - whether with housecleaning or food delivery or simply being a safe person to provide companionship. These early volunteers helped fight the stigma attached to HIV/AIDS. /6The brilliance of the program was that it recognized the unique need facing AIDS patients. These were young & healthy men struck down in their prime - without family support systems. Their lovers & friends were also sick. Without this program they had little to no help. /7Disabled people have been saying for years that hospitals can be unsafe places & that having an advocate with you is one of best things you can do. Unfortunately many disabled people have no one in their lives that can fill that role & professional advocates are expensive. /8The Covid pandemic has only further exacerbated a problem that has always existed. That disabled & marginalized people - especially those without family to support them - often suffer mistreatment at the hands of medical professionals. /9They aren’t always in a position to advocate for themselves and when they do - they can be labelled difficult or anxious which negatively impacts their care. Covid has added an additional layer of complexity as many disabled patients fear contracting the virus in hospital. /10We are now starting to see the negative effects of the dropping of mask mandates & Covid precautions. Patients are reporting being accused of anxiety, discharged from care & even placed on psychiatric hold for trying to get HCWs to mask. Hospital acquired Covid is on the rise /11In addition many disabled & high risk patients are housebound and only go out for medical appointments. When they become needlessly stressful it can be very hard on a person’s overall wellbeing. Having a kind & like minded person to accompany you could provide a big lift. /12I would love to see an advocacy or volunteer organization try and leverage the fantastic work of the GMHC to create a network of Covid cautious, disability aware allies who would be open to assisting patients with medical appointments & care at home. /13They would be volunteer programs that could be made available to anyone without family or friend support & who can’t afford to hire private help. Like GMHC training would have to be provided - but they proved programs like this can be a huge success. /14If you’re aware of any community level program like this - please reply so I can amplify. Additionally if you would be interested in participating please drop a comment. Perhaps we could start a hashtag to see what support is out there for a program of this kind. /15The disability community & Covid cautious are a compassionate & well informed group of people - together I think we can make healthcare safer for everyone. /16If you want to learn more about the GMHC’s “buddy program” I highly recommend resources like POZ. (Alt text in image & continued in next tweet) /17“Back in 1985," Rindler recalls, "the need was for concrete help-like doing housekeeping-but today it could be going to the movies or a café.
For someone isolated and feeling forgotten, just leaving the house improves mental health.” /end
yes
In the early days of AIDS epidemic a grassroots organization called the Gay Men’s Health Crisis (GMHC) was formed. They did incredible work for patient advocacy - including devising a “buddy system”. A 🧵 on how a similar system could assist disabled & Covid conscious patients /1 ... Early HIV/AIDS patients faced tremendous barriers to care. The disease was poorly understood and originally named GRID (Gay Related Immune Deficiency) and as a result there was rampant discrimination against gay men. /2 ... In many cases even doctors & hospitals would deny treatment - and men were left to die at home with only their partners to care for them (many of whom were sick themselves). The GMHC was formed and in 1982 instituted a volunteer “Buddy Program”. /3 ... It was designed to provide support to people with AIDS - everything from housecleaning and meal preparation to friendship & company. One of its most critical purposes was helping patients get to the hospital & medical appointments. /4 ... Volunteer “buddies” were trained to provide support before, during and after appointments. Given the amount of misinformation and stigma attached to HIV/AIDS - having someone to advocate for you & protect you from healthcare neglect was invaluable. /5 ... Buddies also helped AIDS patients who became too sick to leave their homes - whether with housecleaning or food delivery or simply being a safe person to provide companionship. These early volunteers helped fight the stigma attached to HIV/AIDS. /6 ... The brilliance of the program was that it recognized the unique need facing AIDS patients. These were young & healthy men struck down in their prime - without family support systems. Their lovers & friends were also sick. Without this program they had little to no help. /7 ... Disabled people have been saying for years that hospitals can be unsafe places & that having an advocate with you is one of best things you can do. Unfortunately many disabled people have no one in their lives that can fill that role & professional advocates are expensive. /8 ... The Covid pandemic has only further exacerbated a problem that has always existed. That disabled & marginalized people - especially those without family to support them - often suffer mistreatment at the hands of medical professionals. /9 ... They aren’t always in a position to advocate for themselves and when they do - they can be labelled difficult or anxious which negatively impacts their care. Covid has added an additional layer of complexity as many disabled patients fear contracting the virus in hospital. /10 ... We are now starting to see the negative effects of the dropping of mask mandates & Covid precautions. Patients are reporting being accused of anxiety, discharged from care & even placed on psychiatric hold for trying to get HCWs to mask. Hospital acquired Covid is on the rise /11 ... In addition many disabled & high risk patients are housebound and only go out for medical appointments. When they become needlessly stressful it can be very hard on a person’s overall wellbeing. Having a kind & like minded person to accompany you could provide a big lift. /12 ... I would love to see an advocacy or volunteer organization try and leverage the fantastic work of the GMHC to create a network of Covid cautious, disability aware allies who would be open to assisting patients with medical appointments & care at home. /13 ... They would be volunteer programs that could be made available to anyone without family or friend support & who can’t afford to hire private help. Like GMHC training would have to be provided - but they proved programs like this can be a huge success. /14 ... If you’re aware of any community level program like this - please reply so I can amplify. Additionally if you would be interested in participating please drop a comment. Perhaps we could start a hashtag to see what support is out there for a program of this kind. /15 ... The disability community & Covid cautious are a compassionate & well informed group of people - together I think we can make healthcare safer for everyone. /16 ... If you want to learn more about the GMHC’s “buddy program” I highly recommend resources like POZ. (Alt text in image & continued in next tweet) /17 ... “Back in 1985," Rindler recalls, "the need was for concrete help-like doing housekeeping-but today it could be going to the movies or a café.
For someone isolated and feeling forgotten, just leaving the house improves mental health.” /end
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