The decision to place a child or an adult of any age in an institution, residential setting or a group home, the latter which is a contemporary euphemism for an institution, is never lightly embarked upon. I remain quite amazed and deeply concerned about the numbers of people, both young and old, placed in residential settings of varying types and incarnations.
Part of me acknowledges that some parents and guardians earnestly believe that it is the best interest of the child to receive care in such a setting. However, I believe that these decisions are often made so a parent(s) can have a life beyond the role of caretaker. Decisions are made for the sake of preserving a marriage, decisions are made so that other siblings in the family are not short changed, and decisions are made because resilience fades and supports erode. All logical, all meaningfully deliberated, all made with a great ambivalence and with a healthy dose of guilt.
I have yet to read or hear that the decision is purely in the best interest of the disabled child or person. Away from a loving home is better in a depersonalized institution or home? I refer not to disabled people who are in the process of learning self-sufficiency; I refer to the fundamentally, severely disabled whose needs and desires can only known by parents.
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.