Tuesday, April 8, 2014

Truth Telling

There are things that are easy to write about on this blog and things that are difficult.  It's easy to write the fun posts, like the most recent one about Naomi's relationship with Lydia.  It's neither easy nor difficult write about our current emotional responses to Naomi's illness.  The journalistic type updates on Naomi are also rather benign.  The historical posts are fairly difficult go write because they require reliving the most difficult and painful experiences of my life.  Then there are the posts I want to write but have yet to because they are very, very difficult.  It is difficult to write these posts because our culture demands relentless optimism, relentless positivity, relentless looking on the bright side.  It's stifling.  And it's not natural.  And it's not real.  I don't believe in pretending that things are something that they are not. For example, I have been wanting to write about how other people respond to Naomi's illness, and, even harder, how they respond to us as we navigate this unending nightmare.  It is very easy to share when people respond with warmth, compassion, tenderness and self sacrifice to our situation.  Unfortunately, the responses are not always positive, sometimes they are shockingly negative, sometimes they are selfish, and sometimes they involve jealousy, which I frankly did not think was possible.  I've learned a lot about myself and Rob during the past 5.5 years; I've learned even more about other people...a lot more than I have ever wanted to learn in some cases.  This life has a lot of hurts, heartaches and disappointments that have nothing to do with Naomi directly.  Some of the wounds are very deep.  Sadly, through the online community I have found of other parents dealing with severely disabled children, our experiences are not unique.  They are all to common.  I am waiting to write more on this topic until I have fully confessed all of my sins related to dealing with the tragedy our little family was dealt.  It seems just and fair to me to share first all of the logs in my own eye until I point out the specks in the eyes of others.  I will do so though, eventually, because, as I have stated previously, my objective with this blog is to share as plainly, baldly, and directly as I can, what it is really like to have a child like Naomi, and part of what it is really like has a lot to do with other people.

The other difficult topic is the one I am writing about today.  This topic is particularly difficult because it has a political bent and that is a topic I try to avoid on this blog.  This blog is not meant to be controversial, per se, and it certainly was not designed to be a forum about, or even a commentary on, the cultural and political landscape of the United States of America.  However, the events of the past few weeks have led me to conclude that, as per my stated purpose of this blog, to not address it would be remiss on my part and would leave part of the picture I am trying to paint very conspicuously empty.  This topic also touches on how other people respond to children like Naomi, but in a more oblique, more impersonal, way.  This topic deals with the public at large, with the interests and priorities of our citizenry not as we claim them to be, but as they really are based on the choices we make as a society every day, based on the people we vote into or out of office, based on how we spend our time and our money and our resources, based on the corporations and charities we support, or fail to support.  Today I am going to write about The System, and about the assistance, or lack of, that families like ours receive every day.  To be blunt, I am going to write about the utter lack of help and support  received by families like ours caring for children like Naomi.  I am going to write about the fallacy of the notion that all social services can and should be provided by churches and private charities.  (I had to pause after I wrote that last phrase, 'churches,  and private charities', because I was laughing so hard about the naive absurdity of the notion that either type of institution, or its members, has the means or desire to provide those services on anything near the scale on which they are needed.)  I am going to write about the fallacy that communities and families can, do or will take care of their own.

Please understand that I am not painting with a broad brush here.  There is a small but significant contingent of people who care not just with lip service and good, though never acted upon, intentions, but with their dollars and cents, with their time and their skills, with what really matters.  These are wonderful people.  These are humane and compassionate people.  We have plenty of these people in our extended family.  They are not the majority.  The majority are truly indifferent, I suspect not out of any flaw in their characters, but more out of a self-satisfied comfort in the ease and fortune of their own lives, more out of satisfaction with aspirational do-gooding rather than actually doing anything good.  These are the lucky majority.  The people who are content to ignore all of the Naomis and all of their families because as long as bad stuff happens to other people and not to them, it's okay.  They don't want to think about us because it might make them sad and that might rain on the parade of their fortunate little lives where the only things that go wrong are the ones that don't really matter.  It does not mean that these people are bad people.  It probably means that they've just never really thought about it before.  And that's okay.  If you are one of these people,  I'm asking you to start thinking about it now. Then there is the contingent that is outright hostile.  This contingent is not small.  These are the people who resent the burden Naomi's care places on public coffers.  These are the people who give us nasty looks when Naomi melts down in public because something she can't explain to us scares her, or she is in pain, or any of the other reasons she cries.  These are the people who think it's unfair that Naomi gets to jump the line at an amusement park while their precious healthy child has to wait an extra 3 minutes.  These are the families who use and condone words like "retard" as an insult, the ones who don't reprimand their children for making fun of children in wheelchairs and braces. These are the adults who mock little children in adaptive equipment in public (true story.  Not mine, thankfully.)   These are the people that resent the accommodations that our family needs as we deal with Naomi's disabilities and attack us with cruel words and ugliness because those accommodations momentarily or occasionally inconvenience them or disappoint their expectations.  These are the people that never stop for one moment to imagine what it might be like to live the life that we do.

Yes, the truth of the matter is that there is little to no help in any formal, institutional way for families like ours. I know of families with medically fragile children who can only be left in the care of skilled personnel that have been on the waiting list for respite services in our state, Pennsylvania, for years upon years.   I know of families who have appealed to their church leadership for in home assistance with tasks like laundry and housecleaning and maintenance only to be told that churches don't organize those types of things anymore because of fears of liability.  I know of a few private charities that provide financial and other assistance to distressed families like ours, but they are few and far between and only make the smallest of dents in the level of need that exists.  I know of families who are hauling 125 pound children with the skills and abilities of an infant in and out of the backs of cars because they can't afford a wheelchair van.

The truth is that children like Naomi are very very very expensive and even if you have private health insurance and/or medicaid for your child (all children like Naomi are eligible for medicaid) it doesn't cover all areas of need and often has a dubious opinion of what is and is not medically necessary.  The state of Pennsylvania, in all of it's wisdom, closed the state run medicaid program and forced all disabled children in to for profit managed care plans.  You know how this works, right?  The managed care plans are paid a flat fee to provide healthcare services to a child like Naomi.  If Naomi consumes few services, the managed care plan makes a profit off of her.  If she consumes many services, the  managed car plan loses money on her.  How can a managed care plan try to assure that it makes a profit off of Naomi?  By denying necessary care and equipment as "not medically necessary" or "lacking documentation" even when the medical necessity and documentation the company demands is cleared spelled out in the request for service.  So families like ours must not only care for our sick, needy, helpless children, but we must go around and around and around with these managed care plans over denials of services that are spurious at best.  This is one of the things we have been dealing with over the past few weeks.   If you have the time and energy and knowledge to fight long and hard enough you can often win, but what these companies bank on is that we have none to little of the three, and if we have it for one fight, we won't have it for the next, and the next and the next, and the next and the next.  And so they play an endless game of cat and mouse where they know the denials won't stand up to scrutiny in the courtrooms but they continue to issue them anyway to exhaust our already limited emotional and time resources and then pocket a buck off of Naomi and all of the children like her.  They deny and obstruct in the hopes that families like ours will give up and not force them to provide the care to which these children are legally, let alone morally (and who is it that says we are a "Christian Nation" anyway?) entitled   I think it is sick, wrong, and, yes, immoral, that any corporation would seek to profit off of the disabilities of child like Naomi by denying care and even sicker that the Commonwealth of the State of Pennsylvania sanctions it.  Why does the state sanction it?  The state sanctions it because children like Naomi are expensive and it saves the state money, and God forbid taxpayers might have to pay a few extra dollars and cents a year to see that children like Naomi and their families have all of the things they need to properly and sustainably care for them.  Families categorically did NOT suffer these cruel games or deal with these dubious denials to this extent under the old state run Access system.  Under the old system it was about need.  It was about justice.  It was about doing what is morally right and required (for the most part...the past is not nearly as rosy as we often like to believe.  In this case, while imperfect, the old system was infinitely better than the current one.)  Under the new system it is about profits for corporations and their shareholders and cutting taxes.  It is about the Almighty Dollar, which, regardless of claims about our special status, our "City on a Hill" Christian heritage, our "American exceptionalism," is the true idol that this nation worships, judging not on what we say we believe, but on what we really do, and in some cases, fail to do.  Not the God of Moses and Abraham, not Jesus Christ whose words about caring for the sick, the poor, the downtrodden, the sorrowful, the cast aside, the socially inconvenient, fill the New Testament.  Let me say it again.  The Almighty Dollar, the golden calf, is the idol worshiped by this nation.  Those of us who are fortunate enough to come from large families willing to help and/or with significant financial resources of our own fare better than those of us who have neither.  For those of who have neither, God help them, because those He made in His image...don't.  Far too many American Christians are content to use their faith and His Word to simply prosecute their prejudices in Jesus' name rather than actually seeking to live according to His example and His message.  And far too many American Christians are content to park themselves and their families in a pew every Sunday for an hour, or participate in a Bible study, or some other such visible expression of their piety and then do absolutely nothing to apply Christ's teachings in any meaningful way.  Far too many Americans consider themselves good people if they avoid doing overtly destructive things.  If they don't beat their spouses and their children, if they don't steal, if they don't use colorful language.  Maybe we need to start considering that in order to be good people we need to do more than just passively not do bad things.  Maybe in order to be justified in considering ourselves to be good people we need to actively do good things. Maybe not beating your wife doesn't make you a good person.  Maybe it just makes you not a bad person.  Maybe helping someone else's beaten wife is what makes you a good person, you see?  The first one is relatively easy.  The second one is relatively hard.

Yes, children like Naomi cost the state a lot of money.  Children like Naomi  also cost their families a lot of money.  In may cases, in most cases, though thankfully not our case, children like Naomi cost their families money they do not have, and so they and their children do without things they need, like wheelchair vans, and medical equipment and supplies, and respite care, and they all to often end up in bankruptcy.  Or they try to raise the money through fund raisers.  Which is doable, except that on top of the crisis that our families live every day, the task is nearly insurmountable.  Have you ever tried to raise hundreds of thousands of dollars?  Because that's what it takes to retrofit a home for disability and acquire all of the equipment and services needed to care for a child like Naomi.  Yes, disability is very expensive.  By a rough calculation, our out of pocket expenses for Naomi are about to cross in to the well over $100,000 territory and she is not yet six years old.   That's because there are many expenses that are covered by no one except the family. We've been working on acquiring a wheelchair van for the past month.  (That's the other experience that has led me to finally write post.)  The conversion to make a van wheelchair accessible is $25,000 on top of the cost of the van.   A wheelchair van costs as much as a luxury car.  We will at some point need to have a wheelchair lift or, more likely, an elevator, built in to our two story home, which is no where near an inexpensive proposition, or we will have to give up our home and move to a one story house.   Even simple wooden ramps are expensive.  Then add in handicapped accessible bathrooms, widened doorway and hallways, lifts or ceiling tracks to lift and move larger children and adults who cannot walk or assist those who are moving them from one position or piece of equipment to another.   It all costs money and there is not much provided by any public or private agency.  A little, but not much.  The state does have a great loan program that is a lifesaver for families like ours.  The Pennsylvania Assistive Technology Fund provides low (3-4%) cost loans for adaptive equipment, like vans and lifts, and home modifications.  There is a cap on the loan size you can receive, which is tied to your income, and you must prove you have an income to qualify. The program is wonderful if you are employed and have decent credit.  If not, well, you and your disabled loved one are out of luck.  The application process is cumbersome.  We've been working on acquiring this van for about a month.  Which considering that it is a great loan rate and a state program is not too bad, but having to navigate these kinds of things is difficult for families like ours when we live every day in a state that most families only experience during times of crisis.  Let me state that again too.  Families with a disabled member live every day, every single day, in a state of crisis.  Everything that has anything to do with disability costs twice as much and takes ten times as long.   But yes, the truth is that children like Naomi are very expensive and there is little institutional help out there, and the help that is out there is cumbersome and time consuming at best, and cruel and profit hungry at the worst.

If at this point you are thinking, see, government is the problem, not the solution, then here's my other truth of the day. The truth is that government provides a lot more services and a lot more help, a lot more reliably, than pretty much any private organization.  The truth is that most people in the communities of people like Naomi have no interest in providing any real, tangible assistance to families like ours struggling to care for our children like Naomi every day.  Ask your self, how many times have you mowed the lawn of, shoveled the sidewalk of, brought a meal to, dropped off a gift certificate for, folded the laundry of, scrubbed the toilet of, written a kind note to, sent a comforting gift to, dropped $20 in a donation can for a family like ours living in crisis every day struggling to care for a child like Naomi?  Never?  If your answer is never then you are a pretty typical American citizen.  If your answer is Never, but you support the creation and maintenance of government programs to provide real, meaningful routine assistance to families like ours, are willing to pay the taxes required to do so, and vote for candidates who prioritize service to those with extraordinary needs, then I let you off the hook.   If your answer is Never, and you claim that the government should not provide those services, but instead private charities, churches and communities should and yet you do nothing yourself to see that they are provided, then you are not off the hook.  You cannot say that  local, state, and federal government should not be involved in providing social services and medical care for people in need, for people like Naomi, and then also not spend a meaningful amount of your time and resources, whether they be skills or money, providing those services for people in your community, both friend and stranger alike.   You cannot.  You cannot say that churches, extended families, communities and private charities should provide needed care and assistance if you do not participate in providing that assistance.  You cannot.  If you do, then my question to you is, what would you have us do?  Maybe you never realized how much need there really is and how much a few hours of your time a few times a year can make a difference for a family struggling to make it through every day.  Ignorance is only an excuse as long as you remain ignorant.  There is no excuse for willful ignorance.  You are no longer ignorant if you are reading this post.  You must choose one or the other.  You must be willing to invest a meaningful amount of your time, skills and/or financial resources in providing aid to families like ours, or you most be willing to pay the required taxes to have government do it for you.  Well, you can refuse both, but if you do you cannot claim to be a moral person, and you certainly cannot claim to be a Godly person.  There are many truths, like these ones, that are ugly and unpleasant, but that does not mean that they should not be confronted.  That does not mean that those of us who have learned them should keep them quiet and hidden out of fear of offending someone. I will not hide the truths I have learned through my life with Naomi.  Disability and the suffering that goes with it teach many hard lessons.  These truths are just a few of them.

How can you minister to a family like ours?  You can provide your skills and services...do their taxes if you are an accountant, go to their home to cut hair if you are a hairdresser if it is difficult for them do get out, cut their lawn, shovel their sidewalk.  Drop off a meal or a loaf of banana bread.  Anonymously mail a gift certificate for a take out place.  Fold their laundry, scrub their toilets, clean their cabinets once a year.  Understand that it's hard for them to get out and stop by with a coffee and snack and some good conversation.  Include a special note or letter in a card at Christmas letting them know that you think of them and keep them in your prayers.  Stop saying people , things and situations are "retards" or "retarded" or "crazy." Stop pounding your hand against your chest and making groaning noises when you want to express how dumb you have been about something.  Stop giving people with unruly children ugly looks.  You don't know why their child is acting out.  Maybe the child is a "spoiled brat" or maybe the child has severe autism or a neurological disability. Disability isn't always as obvious as a child like Naomi in a wheelchair.  Send them a message on facebook letting them know you care.  Understand that when they only accept your social invitations one in ten times and only return the favor 1 in 100 times its not because they are rude and have no manners, but because it's all the can do and keep inviting them.  Stop pretending to yourself that we don't exist because it is easier for you not to think about us.  Donate to our charities and to charities that help families like ours.  Call up and ask them what you can do for them and don't take "Nothing" for answer. Vote for candidates who are willing and eager to sponsor and vote for legislation that helps children like ours.  Tell your elected representatives that our families and their needs matter.  Do any one of those things and do them regularly.  Do things I haven't listed here but that would be equally appreciated and helpful.  Do something.  Recognize the truths I am writing today and do something about it.

 Naomi counts.  She matters.  So do all of the children like her.  Her needs are immense.  Their needs are immense.  We want to care for our children well.  We can't do it alone.                                                                                                                                                                                                                                                                                                                                                                                                                                                 


  1. Anne, I can't imagine what you and Rob have been through. How can I help?
    Mary Nee

    Ps.you guys are always in my prayers

    1. Thank you, MaryRae, for your willing heart and for your prayers. You are a bit far from us, but my suggestions range from finding someone in your community to assist in any way you can, or you can contact one of these two organizations. The first is in Pittsburgh, and is called Grady's All Stars. This family has two children suffering from batten's disease and their foundation raises money to help provide for their needs and those of other children afflicted with Batten's disease. The other is The Parker Lee Project, which also raises money to provide services, equipment and medical supplies to families caring for children like Naomi. Both foundations can be googled. You can also share our blog with others and encourage others to assist those in their community who are in need. Thank you again for your desire and willingness to help.
      With many thanks and much appreciation,

  2. What a wonderful, beautifully written post.
    I can't help you but I can certainly have a closer look in my own community.


    1. Thank you, Nicole, so very much for being open to hearing my message and for your willingness to help. I guarantee it will be much appreciated by who ever the lucky recipients are, and by me.
      Blessings to you all,

  3. If you have the time and energy and knowledge to fight long and hard enough you can often win, but what these companies bank on is that we have none to little of the three, and if we have it for one fight, we won't have it for the next, and the next and the next, and the next and the next.


    Every word you write, I read. I think about your family, about Naomi, all the time. I pray for you.

    This post was...perfect. Right. True. All of it.

    I have been battling incurable disease for more than a decade. My oldest son has Autism and is not responding well to interventions. This does not mean I understand what you and your family bear with Naomi's illness. It would be offensive to say, "I know how you feel." I realize no words can possibly describe that.

    But you do describe it. As well as anyone can, you do. Your voice comforts me when little else does. Not because I am glad you are faced with so much suffering. I'm *not* glad. It isn't fair. I don't understand why so much is laid on some, and so little on others.

    I've wept bitter tears in darkness, reading. I've struggled to find any words to respond, even when yours are so meaningful. Words feel impotent in the face of it all. What words can touch this?

    But you're brave enough to put your words out there. You're brave enough to write about Naomi, about what her struggles are. About what your struggles are.

    It matters. It matters so much that you write. I'm so thankful you write the hard posts, as well as the others.

    I agree with you. It is hard for me to hear talk about how much comfort and support people give in the hard times. That might be true if the hard times are short. But when they last for years, it is very often not true - not at all. Some of the sharpest barbs come from where we would least expect it.

    You're so right that even the smallest act of kindness, reaching out, caring - it all matters. I pray and look for those ways. I feel broken beyond repair. But I will keep looking.

    And think of you - and Naomi.

    God, please keep this family, please bring help, please bring relief.

    Cathy in Missouri