How Should Severely Disabled People Be Cared for When Their Parents Die?

[polskieserce]

This article explains the situation very clearly.  Please read it if you want to take part in this thread....

PBS NEWSHOUR: What happens to developmentally disabled as parents age, die?

Many of you on Phatmass seem to have an aversion towards wealth redistribution and having the government get involved to help people.  Since you don't want to have the government to care for these people, what's your proposal to care for these people once their elderly parents die?

[CatherineM]

I take care of a 25 year old developmentally disabled adult. His Mom isn’t dead, unfortunately. It’s a program run by Catholic Social Services so that they can have a family life without living in a group home. It’s also cheaper to the government. 

[Wolf]

I too have struggled with this issue, having had to take care of a sick relative. I received no financial help at all.

[polskieserce]

On 10/17/2017 at 12:26 PM, CatherineM said:

I take care of a 25 year old developmentally disabled adult. His Mom isn’t dead, unfortunately. It’s a program run by Catholic Social Services so that they can have a family life without living in a group home. It’s also cheaper to the government. 

I have a severely disabled brother who had to be institutionalized due to his problems.  Before this happened, he did get some services but they were poor quality and very inconsistent (due to lack of funding from the government).  Before things went downhill and my parents got divorced, we were in contact with other families who had young, disabled children.  They also said it was virtually impossible to get good services and they wondered how their child would be cared for later in life.

Don't you think it's delusional to say that religious organizations can fully care for all of the seriously disabled people out there?  Decades ago, the government essentially warehoused severely disabled people in inhumane conditions.  Religious groups did not prevent that from happening.

[CatherineM]

22 hours ago, polskieserce said:

I have a severely disabled brother who had to be institutionalized due to his problems.  Before this happened, he did get some services but they were poor quality and very inconsistent (due to lack of funding from the government).  Before things went downhill and my parents got divorced, we were in contact with other families who had young, disabled children.  They also said it was virtually impossible to get good services and they wondered how their child would be cared for later in life.

Don't you think it's delusional to say that religious organizations can fully care for all of the seriously disabled people out there?  Decades ago, the government essentially warehoused severely disabled people in inhumane conditions.  Religious groups did not prevent that from happening.

Some of those warehouses were run by the church. Society was different. What we thought about the disabled was different too. We can’t fix the past, only the future. 

[Era Might]

On 10/24/2017 at 12:14 PM, polskieserce said:

Don't you think it's delusional to say that religious organizations can fully care for all of the seriously disabled people out there?  Decades ago, the government essentially warehoused severely disabled people in inhumane conditions.  Religious groups did not prevent that from happening.

Although the macabre treatment has improved (thankfully), I think institutionalization in general is a problem. Everyone wants to live and not die. Everyone wants to get cured of cancer or heart disease and whatever. I suppose it's good for human knowledge and culture that doctors have people to work on. But, that also requires a hierarchical financial-medical system where the people who have access to money and resources get it, and other people have to make do. We can spend billions curing complex and expensive diseases, but suppose instead of saving 10 people from a complex disease, we spent that money curing a million people of some more common problem like lack of water, food, shelter? We build hospitals in developing countries, but how many of the poor there can actually afford advanced medical care? What if instead that hospital money went to more practical uses that would have a wider benefit overall?

And then there's the problem of dying. Nobody wants to die. I wonder what's worse, dying or the institutionalization of living. I hope I never have to find out. I have a general dislike for hospitals. I avoid them. I hope I never get a serious disease because I might die just for spite, just to prove that a man doesn't HAVE to be institutionalized, that he has the option to die. Or, maybe I'll fear death as much as the next man and be institutionalized. I'll have to wait and see.

Though, the disabled are a different case. Less a matter of facing death and more a matter of what it means for someone to be part of society. Lots of homeless on the streets with mental illnesses, disabilities, people in wheelchairs. So, it's not like this is a theoretical discussion, we pretty much live with the fact that we can't (or won't) do anything for them, they just have to grin and bear their life.

[Seven77]

 As someone who is technically severely disabled (I have Duchenne muscular dystrophy, which progressively affects major muscles), the original question is one that affects me. I rely on skilled nursing care as I require the use of a power wheelchair and a portable ventilator. Recently, the state reduced the hours I can receive. I live at home with elderly parents due to my circumstances… I am a contributing member of society… An institution is still, even today, a dreadful place to be in, and a group home is not for me. I don't know what the solution is to your question.