I have nothing but disdain for fathers who leave the family to fend for themselves because this life is stressful and hard. I have little but condemnation for fathers who disappear and do not financially or emotionally support their disabled children. The fires of hell burn especially hot for these dudes, and it is usually the man who fails to recognize and embrace his paternal bond. Mothers rarely abnegate their love-bond. This is certainly an unenlightened social darwinism.
So given the shallow reasons to move severely disabled children and adults into institutions, residential placements and group homes, what lives do these precious vessels of life-force face. Physical and sexual abuse is common in these placements, neglect is more common as patients lie in urine and feces, miss needed medications or feedings. There are so many stories of caretakers ignoring their charges, stealing what little the disabled have, compromising medication and feeding schedules and on. Employees of these places are more often than not poorly educated and sinfully underpaid. The result is that people die; our kids die. It is well established that all people who are deprived of physical touch and contact die much sooner. Yet these decisions serve the purpose of those who give their kids and elderly away. It is an early death sentence in many cases. Stories of abuse in institutions and homes are legion, daily in media by the hundreds and I will spare you the horror of the many links I have collected. It just ain't right!
I am dismayed at parents who want to be something more than the parent of a severely disabled child...what could be a higher giving and measure of heroism? What could be more consonant with highest calling of parenthood? Does ethics and morality dictate these decisions? Does maternal or paternal obligation dictate these decisions? Or does self trump the need for a dignified life of the disabled? Do institutions devalue or enhance the value of disabled people? Our society justifies poor decisions, condones a lack of resilience, and allows people to feel justified about dumping kids and adults on the state...a quite uncaring, unaccountable and anonymous entity. Never is there a discussion of the ethics or morality of institutionalization. "Out of sight, out of mind" is not a hack expression, it is a statement about reality. Visiting your kid on a weekend or taking him or her home for a day is symptomatic of this hack expression.
I would guess that one could criticize my thoughts and musings under the guise that I am very judgemental...I am. I believe that institutions, residential placements and group homes should be abolished and that monies saved should be used to help parents keep their severely disabled charges in the home. The cost of an institutional placement in Massachusetts is $250.000.00. Could we not keep the same person home with mom and dad for a small fraction of the price? Isn't home the only place that true love exists? Is it not the singular place where the disabled are loved, cared for with utmost dignity and continue to live and thrive.....?
And when parents are too old and frail? Can we make a leap and assume that extended family and siblings inherit a moral and ethical duty to assume the same care? Or are their lives too important? Is it not the duty and the obligation of society and family to ensure care for the most needy? Is that not the criteria by which our society and we ourselves will be judged? And judgement will occur in future time as consciousness evolves to higher planes? Our children are our children, not the children of institutions. Yes, I realize the insufficiency of social supports; I realize the indifference of family and friends in assisting us in the care of our disabled family members; I realize the rationalizations on why those closest choose to be the farthest. Yet, I realize that group homes and institutions, no matter how wonderfully construed, are grossly inadequate in providing the love which is the lifeblood of the disabled. And no matter how cognitively compromised the person, they feel the love and dignity emanating from loving care....without those elements there is only death.
Yes, there are some laudable placements in the world, i.e. L'Arche...an intentional community of residents, volunteers and developmental disabled. But are there severely disabled, medically fragile members in this community?...probably not. Nursing home, state institutions, yes...death sentences. Home is where the severely compromised need to live with love and dignity; home is where the hurting elderly need to live with love and dignity; home with family is where the severely mentally ill need to live, with love and dignity. Responsibility is uncomplicated: family and extended family is home and society has a duty to provide the supports to allow for this obligation to be met. There is no greater honor than to care for our sons and daughters and mothers and fathers, for our nieces and nephews, our brothers and sisters. This is the apex of actualization and one does not need a god or a religion to provide us the reward nor the incentive...duty, obligation and love are required.
So, my judgmental self says close all the group homes, the institutions and residentials....allow the family to care for their own (with complete financial, physical and emotional supports) and counsel them to understand that providing care is the highest reward, the utmost self-realization and the deepest meaning.
And when parents are too old and frail? Can we make a leap and assume that extended family and siblings inherit a moral and ethical duty to assume the same care? Or are their lives too important? Is it not the duty and the obligation of society and family to ensure care for the most needy? Is that not the criteria by which our society and we ourselves will be judged? And judgement will occur in future time as consciousness evolves to higher planes? Our children are our children, not the children of institutions. Yes, I realize the insufficiency of social supports; I realize the indifference of family and friends in assisting us in the care of our disabled family members; I realize the rationalizations on why those closest choose to be the farthest. Yet, I realize that group homes and institutions, no matter how wonderfully construed, are grossly inadequate in providing the love which is the lifeblood of the disabled. And no matter how cognitively compromised the person, they feel the love and dignity emanating from loving care....without those elements there is only death.
So, my judgmental self says close all the group homes, the institutions and residentials....allow the family to care for their own (with complete financial, physical and emotional supports) and counsel them to understand that providing care is the highest reward, the utmost self-realization and the deepest meaning.
My comment disappeared, so I'll amend it to an idea I've proposed to various parents before, but somehow there seems to be no traction around it: We need a political coalition to highlight the potential savings, state or federal, of providing better funding for support in the home, paying people a competitive wage, as an alternative to institutional care. This is work that can't be outsourced and is, like prisons (sorry) a growing industry.
ReplyDeleteI would gladly join that coalition!
DeleteI would as well. Either that, or we could form some sort of communal place where we could live and help one another in our own homes.
DeleteI love this post, Phil. There's a lot to think about here. I've always imagined Daniel living close to me as we age. Either in my home with supports, or down the street in a neighborhood home with caregivers doing the work with myself popping in whenever I want. In Florida, that's not going to be easy because of lack of funding.
ReplyDeleteI have just this week revisited the idea of moving back up north where I have a lot of extended family who love Daniel. I've gone so far as to start the application for a nursing license, and checking on the availability of in-home support for Dan.
I am realizing that my original idea is not financially possible with the models we have in the states right now. As I said to A in the comment above, I would get on board and help with the coalition she suggested.
A, Carolyn....I do believe that there needs to be a national movement to provide necessary supports to keep people in the home. Too often, it's a matter of individual effort (adamant, persistent screaming)and the beliefs of the individual states to begin a momentum which can spread. One person at a time.... I'll share some of what we did for Adam.
ReplyDeleteAdam now receives 72 hours of Personal Care Attendant through Mass. Medicaid at about 13.00 per hour; 40 hours of which can be paid to a parent. The Health Insurance Premium Program in MA pays my family premium for health insurance (I get the best plan..any doctor, anywhere in the country) so that I keep Adam on my plan as a disabled dependent (about 850.00) a month. That keeps Mass Medicaid in the secondary position. He gets another 600+ a month from SSI which is tax free. The Department of Developmental Services gives another 16,000.00 a year through a Participant Directed Program which is actually discretionary money and substitutes for a placement in a Day Habilitation Program. Additionally he gets another 200.00 in SNAP food benefits because I declared him as a household of one under the POMS regs. When he was under 21, additional resources were available specifically to keep him at home and out of residential. A lot of mining down in the bureaucracy and a lot of persistence, but in Massachusetts some programs are available. There are beginnings which we fight for. Our next efforts are for better wages for PCA's as well as health benefits and that may be a reality in 2014 because the PCA's formed a statewide union. It's a model and it provides for our ability to keep Adam at home always.
Thanks for sharing all of the details, Phil. I think it's sad when I meet parents of young kids with DD who don't even KNOW about the med waiver. We all need information and access to the right connections!
DeleteAs a matter of immediate necessity, of course most of us do it one person at a time, and share our methods with our confreres, but I think some serious number crunching needs to be done, fiscal analyses that can be shared with congressmen/women and senators as part of a movement to develop some new models based not on a plea for quality but as a straight-out matter of efficiency and savings, if in fact that's what the numbers showed. Because as we know, money talks. Elizabeth's idea is one I have had too, based on models of co-housing, but it's certainly not simple to build such a community and make it last. Financing it is only one of the challenges.
ReplyDeleteAnyone out "there" have any knowledge about successful co-housing or intentional communities for parents and disabled in the US. I would love to research, but knowledge of one that works is something I don't have.
ReplyDeleteI started researching, but haven't come up with a model that exists in the form I'm interested in. I've been talking with parents in Florida who were once pursuing them, but they haven't gotten far.
DeleteI've thought about a L'Arche type of community for families to live WITH their kids with severe disabilities. Right now all I have found in my research are homes that are appropriate for disabled folks with the skills to work and become somewhat independent.
There are the Steiner/Waldorf-based communities, but they aren't for kids as disabled as ours, surprise, surprise....
ReplyDelete...and the parents don't generally go to live there.
ReplyDeleteThere must be a model or an intentional community out there somewhere for parents like us and kids like ours...I will do as much searching and consulting as is possible...there must be a pioneering group somewhere with the intention to be sustainable? Maybe this would be a project in my old age?
ReplyDeleteI have had some one on one conversations about this---not sure what your definition of sustainable is but mine included farming, enough to be self-sustaining if necessary. And, not to be indelicate, but there is the question of how everything continues when parents die. I know that's a bit of a conversation-stopper. Apologies. There are elder communities that are starting to form as the boomers age and wish to pool resources, but none of these models deal with taking care of handicapped kids, even though we all realize we may ourselves need assistance at some point.
ReplyDeleteI guess sustainable is a buzz word and I meant it to imply a type of community that would continue to sustain itself when the parents passed to provide for the adult/child. A caring sort of place that would take care of all for generations solely focused on care for severely disabled...almost as a vocation...a new utopia. What a dream!
DeleteI'd like to chime in here with experience from two different models: the support given here in Israel and in The Netherlands. In Israel a child born or 'incapacitated' within the first year is not eligible for chronic care in home, but can be put in an institution. Monthly allowance is ~$800 plus another $800 for travel expenses/upkeep of the minivan. That's it. No nurses or respite. If you can afford to pay them, you are generously given the opportunity to get a license for a Filipino migrant worker (untrained).
ReplyDeleteIn Holland you can choose for a yearly budget including parent-pay (up to 28 hours/week?) or for the 'state' to handle the expenses according to their plan.
These vast differences stem not from allocation of resources as much as from cultural differences. Acceptance of norms and respect. The down side to that is that in Holland, just as severe disability is so well integrated into society, so is the notion that it is OK to kill a disabled child after birth to spare it suffering.
I think what we have here is trying to fit a square peg into a round hole and I will definitely continue to try that, ad infinitum.
Phil,
ReplyDeleteSocial change is always hard, but I agree with you that people do better when they are cared for and surrounded by their loved ones. That is why we have long-term health insurance for when we get older, but it is expensive and something I know many cannot avoid, it would be nice to have the option to use government money at home instead of having to spend down and sale family homes to have Medicaid care for our elderly and disabled.
As always, I'm so glad Adam has you and Sharon and I suspect he'll always have Aimee too!
Agreed Sue. Thanks to some bureaucrat who developed the concept of "supplemental special needs trusts" for our kids and "living trusts" for adults to prevent the need to spend down to preserve basic Medicaid/Medicare entitlements, we can stay at home with a bit more dignity. One of the few time the bureaucracy has intervened on the side of "the people."
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