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Friday, August 23, 2013

An Approaching Problem Society is Not Prepared For or Thinking About

I am not a big stats guy. My father used to tell me "figures don't lie liars figure". But when it comes to demographics I find statistics can be helpful. I came across a statistic at that I think is critically important. 76% of the 4.3 people with developmental disabilities live at home. The family member that cares for such an individual is at least 60 years old. These care givers, most likely parents, were and remain warriors. These people cared for their child or children and rejected institutionalization either forced or coerced. They were a force that that led to 40 years of progressive legislation designed to empower all people with a disability.  These parents have worked hard to give their dependent children the best life humanly possible. They have done so with far too few resources and social support. In recent years these parents have been forced to fight for the meager assistance that exists because budgets have been slashed. As is often the case when budgets are cut the most vulnerable are impacted.

The generation of parents who have spent decades if not their entire lives caring for their dependent children and now dependent adults love them dearly--a fact utilitarian philosophers do not like to acknowledge in their quest to create a nomenclature to determine who is and is not a person. Scholars such as Peter Singer and Julian Savulescu just do not get disability at its most fundamental level. Nor does Dominic Wilkinson who recently published Death or Disability. In this text Wilkinson writes about "replacement" and substitute" children. Savulescu writes about post birth abortion and how parents have the moral obligation to conceive a child that is most likely to have a good quality of life. I find these views steeped in academic discourse deplorable. It may look good on paper, sound great at a conference such as the American Society of Bioethics and Humanities, but the reality is very different. Just ask or read the work of Eva Kittay or blogs such as Single Dad Disabled Daughter or Life with a Severely Disabled Child

This first generation of parents that have cared for severely disabled people are aging. They know that soon they will no longer be able to physically care for their child. Some of these people dependent upon parental care, many in fact, need 24 hour care. All parents of dependent children worry about their child. What is going to happen when they get too frail to care for their child? What will happen after they die? Multiple agencies that serve the needs of adults and children with profound disabilities are asking this question. Sadly, I feel no one who has not been directly touched by severe disability really cares. We as a society have replaced the horrors of large institutions and created more socially acceptable smaller institutions we call group homes. I do not mean to imply group homes are not good. Rather, any institutional setting is less than ideal when compared to a home environment.  We as a culture have failed to integrate people with cognitive and physical disabilities into the community. I bemoan this failure.

What gets me, what makes me furious, is the lack of acknowledgment both financial and social for the role these parents have played in the life of their children. These parents have literally saved the government hundreds of millions of dollars and provided the best care humanly possible. They have gotten very little in return from the government and society at large.  Frankly I do not get it. I do not get the fear and isolation associated with disability. I can assert myself and rail against the bias we call ableism. But what I experience pales in comparison to what people with a significant physical and cognitive disability encounter. The stares are not nice. The avoidance obvious and rude. When I see this I get upset. Go ahead, be rude to me. Be demeaning. I can take it. I can shove such bias back in another person's face if I want to. But please tell me what goes through the mind  of a person that is physically or mentally abusive to a person with a significant physical and cognitive disability? If a defenseless infant was abused all would be shocked and condemn the abuser. But what happens when a person with profound disabilities is abused or worse murdered?  The criminal or abuser is shown great mercy. Indeed, story after story of mercy killings are told. Robert Latimer who killed his daughter is no longer in prison. He is out and about speaking about his crime deemed a "compassionate homicide". He still believes he did nothing wrong. In 1993 the murder of Tracy Latimer was sensationalized in Canada and was used as a referendum to discuss euthanasia. In 2010 Latimer was released on parole. This leads me to ask if his daughter was "typical", that is not disabled, would he be free? No. Would he be sought out by the press? No. This sends a clear cultural message: the lives of disabled people are not valued, they are different somehow not fully human. Disability adds a level of complexity we are ill prepared to examine. The consequences of this can be deadly. Think Ugly Laws. Think Eugenics. Think involuntary sterilization. Think growth attenuation. Think assisted suicide. History is replete with lessons we choose to ignore.

Many scholars in bioethics and related health care fields are deeply concerned about aging baby boomers. All those forward looking are deeply concerned about aging boomers who will experience dementia. It is estimated that by 2050 there will be 13.8 million people with some form of Alzheimer's like dementia. The cost of caring for people with demential will likely exceed $1.1 trillion dollars and consume 70% of Medicare and Medicaid dollars. I have followed the concerns many have expressed about those who will experience dementia. I have yet to see any scholar outside those directly tied to caring for those with profound disabilities (think ARC) to express any interest the life of aging parents caring for a dependent adult. What will happen to this population of severely disabled and dependent people? What will happen to people with severe disabilities whose parents are too frail to care for them?  My greatest fear is that dual suicides will increase. Regardless, this is an issue that must be addressed.


Anonymous said...

Great piece, Bill. You have probably read the story about the elderly man in Oakland who recently killed himself and his quadriplegic daughter. He was 88 and terminally ill, and she was completely dependent on him for care:

I was surprised at my own response to this story. My first response was, "Oh, God, no." This is usually my response to the murders of disabled people by parents and caregivers. But that faded very quickly as I thought about the context. His impending death was the motivator here, not his daughter's disability. He very likely didn't kill her because he wanted a "normal" life, or resented having a disabled daughter, or thought life had done him wrong; after all, he had cared for her for 25 years. He very likely killed her because he was dying and he was terrified of leaving his completely dependent daughter in the hands of strangers. And he had good reason to be terrified. Judging by the neighborhood they lived in, these were not people of means. His daughter was likely headed straight for substandard care in the disability gulag, not a first-rate nursing facility or long-term care home. The woman had a brother who helped, but it appears that the bulk of the caregiving fell on the father and that no one was stepping up to reassure him that they would be there after he died.

I'm beginning to realize the necessity of separating the responses to these stories, which inevitably follow the logic of "the disabled person was suffering and the parent/caregiver put them out of their misery" and what was really going on for the people involved. I don't think he killed his daughter because he thought she was suffering; I think he killed her to prevent her from suffering abuse, neglect, loneliness, and indignity at the hands of uncaring strangers after he died. As strongly as I feel about the murders of disabled people in general, I see no selfishness in this instance. The man was faced with an impossible choice on his daughter's behalf: What is better? Death or hell? That someone who spent his elder years caring for his daughter would ultimately take her life (and his own) says far more about the world we live in than it says about him. I feel for this man in a way that I don't usually feel for people who commit these murders. There was no good ethical choice here because the world didn't leave him with one. That's not on him. That's on the world.

To me, this is very different from a healthy person in the prime of life who kills a child because "they just couldn't get proper support services and snapped." Bullshit to that. This man spent 25 years caring for his daughter and, by all accounts, did an outstanding job. His worry was not about a lack of support services when he was still alive; he could make up for that lack. But after he was dead -- what then?

tigrlily said...

Rachel, I tend to look at it from a different angle. Granted I don't know the details of this latest case, but the question that arises for me in cases like this is, why isn't the daughter living independently. My sense is that California is one of the more progressive states in terms of its personal assistance services (though cut-backs have probably done a lot of damage.)

When I did my study in 1997 of parents who kill their disabled children, I noted that some parents who killed their adult children expressed proprietary attitude. From the study:

"Patricia Kirisits beat, stabbed and strangled her daughter Julie because, as she said, "I could never stand anybody else caring for her. She has the mental capacity of a 6-year-old" She referred the 23-year-old as her "little girl." Julie was slated to move to a group home."

To me, the parent who enables a child to develop their full potential, and pursue their own life -- with the aid of a surrogate if necessary -- is serving the child better than the parent who provides care until he or she literally drops dead.

Claire said...

Tigrlily...your point is very interesting and, as the mother of a young adult with severe disabilities, I agree with you EXCEPT that reality steps in: in Ontario, waiting lists for housing for individuals who need support is a minimum of 10 years. Secondly, some out of home placements (all over North America) are appalling. Living conditions are not good, caregivers questionable, etc etc. Some parents resort to murder/suicide (I think those parents are fundamentally depressed, however) because it would be akin to abandonment to leave their adult children in such circumstances. As a group, we parents of kids with significant disabilities need to fight for good, safe, affordable out of home placements. Sometimes, we are just too tired to rally.

Jo Kelly said...

This is scary when you consider the statistics. Rachel I too felt similar to you when I read that story. On the other hand, I too wondered why this woman wasn't living more independently - but I always have to remember that it's the US, not Canada.

When Tracy Latimer was murdered by her father I truly worried about the reactions across Canada. I was so shocked by how many people supported him. This was really the beginning of my journey into being an activist - although I've kind of been one my whole life - this was what finally made me feel like hey - we need some changes here! WTF is wrong with these people?

We have a new program here called a Registered Disability Savings Plan, which is similar to the Registered Education Savings Plan. You put money into it and the government matches you - depending on your income - as much as 3 to 1. I've taken advantage of it and have this extra money sitting there now for my retirement. It's meant to assist the adult disabled son or daughter in their later years, once you've moved on to higher plains (so to speak!). Luckily they set it up so that one could do a plan for themselves, as I am not dependent on anyone. Again, if you have no money to begin with you can't take advantage of it - it's almost like the government is saying: OK, we'll help you with your disabled child, but not if you're poor. There's always a catch.

Anonymous said...

tigrlily -- Marian Roberts was not simply quadriplegic; she had a traumatic brain injury that was the cause of her quadriplegia. There are many people who fit that profile and for whom "developing their full potential" and "pursuing their own life" means living with the people who love them rather than with a stranger. I see nothing wrong with a 63-year-old man taking on the care of his severely disabled 33-year-old daughter for 25 years. Isn't that what families are supposed to do? It isn't infantilizing the adult. It's keeping the adult knit into the family in a world that isolates them because of their disability.

In any case, I see no proprietary attitude in anything that has been written about William Roberts. Not all parents who murder their children fit into that category. He does not appear to have resented his daughter, or to have felt entitled to a different life, or to have acted like a martyr. By all accounts, he simply toiled to take care of his daughter in his 60s, 70s, and 80s as well as he could. He was dying and he was terrified. I get what that terror is about. It's the terror of anyone who ages and think about what might happen to themselves or their loved ones as age or illness or disability change everything. I don't fear pain or further disability or even death as much as I fear falling into the hands of strangers for all of my care.

Matthew Smith said...

California in general is not that progressive when it comes to funding for disabled people's care. I know of one lady in northern California, a quadriplegic from a traumatic brain injury about 15 years ago; she also cannot speak but is cognitively intact. She is in her 30s I think, and her mother cares for her alone. Not an ideal situation because, last time I had any contact with her, her mother was currently living with the daughter's former boyfriend, but she has no other option as the family can't afford care and the state won't provide it. I think it may be certain cities (e.g. Berkeley) that give California that reputation.

A said...

Rachel, I think "death or hell" is a very succinct summation of many people's dilemma. I feel the only way to sidestep those lousy choices is to invent something for my own daughter out of thin air, because it surely doesn't exist now.

william Peace said...

A. I do not know a large number of parents who are approaching or in their 60s who are the primary or sole care giver of a dependent adult with profound disabilities. But of those parents I know who do care for a dependent adult they all express the same angst you refer to "death or hell". This is a human rights violation and a stain on society. I deplore the lack of resources directed to supporting all people with a disability.
Rachel and tigrlily, I am not familiar with the link provided. I read the story and it is very spotty and lacks detail. I should have been more clear on what I consider to be a severe disability. I was referring to a person that cannot do any activities of daily living and needs total support 24/7 both physical and cognitive.
Tachel, All people with a disability and many without fear institutionalization. Like you, this is my biggest worry.
Matthew, Yes, California is not a good state to liv in for people with a disability.
Jo, Canada does a vastly superior job addressing the needs of all people with a disability. Of course flaws in your system exist but a not for profit health care system directly benefits the greatest number of people.
Claire, A year or so ago the NYT did a series on the status of group homes in the state of NY. One state shocked me--20% of residents die under mysterious conditions. The big concern is abuse and lack of trained staff. And sadly there are indeed some group homes that are deplorable. Even excellent group homes cannot possibly match in home care.

Unknown said...

Thank you for writing this. The discussion in the comments has been thought provoking.

I just wanted to add one comment: I live almost walking distance of the neighborhood where the man and his daughter lived. I'm not sure the assumption that they were people of no means is knowable; the neighborhood is very diverse socioeconomically.

A said...

I am hoping that some new models of care will arise as baby boomers age. There's an ad I've heard on the radio recently for a new retirement/assisted living community for LGBT folks. Some of the ad buzzwords are "acceptance" and "wine-cellar". Both of these link to "life-style". "Life-style" and "institutional" or "group home" seem to me like oil and water---they don't mix. And that may be, as Martha would say, a good thing. A damn good thing. I was also very interested in the model of Alzheimer/dementia care described in a recent New Yorker piece; it too suggests new and classier, more thoughtful, individualized and engaged ideas of nurturing people whose needs are intense:

Middle Child said...

I have a good friend Dorothy. She is in her early 80's and has been caring for her daughter who was badly injured when she was 21 and with a small baby. The daughter needs total care as basically a high level Quadriplegic but sadly with brain damage as well - she has daily fits. Dorothy and her husband raised her daughter's baby who is now close to 30. Dorothy was so proud of how healthy she kept her daughter and on the few times she had to leave her with paid carers she worried, and was usually right in her fears as things seemed to happen when she wasn't there. In this time Dorothy's other daughter came home (mid 40's) with her children - as she was dying from Cancer. Dorothy was torn but she got through. Last year Dorothy's husband died suddenly as a result of medical neglect. Dorothy is now failing in health and was forced to put her beloved daughter Faye into a nursing home. She visits daily to ensure Faye is actually fed and given liquids - and turned - the care is not good and Dorothy worries. Luckily the adlt daughter, recently married is coming to live closeby and that will mean that there is someone to care for this woman. At the end of her long life Dorothy has cared and loved for her family, especially Faye in such a way that Faye has been aware of that love and has always been treated by her family with the dignity she needs... Faye should not be in a nursing home. There should be around the clock help available so Dorothy can have her daughter closeby but know she has her bodily needs taken care of. There is nothing like this. Quite young people are put into Nursing homes as parents fail in health. Dorothy is an amazing woman not because she loved and cared for her child but because she is still out there fighting for others, still wickedly funny - After all these years she has more compassion in her little finger than many ever develop. But I sense a sadness in Dorothy and I know I probably won't have my friend for many more years - in a way she was sort of my mentor because of her dignity and her fierceness when it came to her daughter's welfare and the welfare of others... its a very real problem - what does happen to those who no longer have a family Carer to protect them from the lack of care most nursing homes have?

Elicia said...

Not so much inspired by your article as by the comments...but have you read about the Pray for Ian blog? A woman's fiancé suffered a traumatic brain injury, and she cared for him for a few years and then they decided to get married. People's responses to that choice are widely varied as I am sure you could expect. I am curious if you've done a piece on Ian and Larissa before or what your take would be on it. Love reading as always.