My voice against the darkness

I’m taking a moment to wander away from the usual posts I put here to make a statement.  As some of you may know, I am the mother of very special and wonderful young man who has a variety of special needs.  In light of the recent and serious budget cuts that seem to be cascading across the country for programs for the disabled, I wanted to post here, the letter that is going off to my representatives.  And ask as well, that those of you that read my blogs or who follow me on twitter or facebook or my wonderful MCHY forum take a moment to read this and if you are so inclined, drop a note to your own representatives regarding the slashing of services for people that have no other voice in the system but ours.   Thank you!

An open letter to my representatives:

I would like to take a few moments of time to introduce you to somebody who lives in your district.    His picture is at the top of this letter.  His name is Robert.  He was born in Cheverly Maryland, has lived in Maryland, New Mexico and in Virginia and now resides here in Hagerstown.  He’s 29 years old, loves his cats, enjoys collecting matchbox cars, and has dark blonde hair and gray eyes.  He is personable and outgoing with a winning smile.  He graduated from Arundel High School and lives with his parents who love him more than you could possibly imagine.   He’s registered for the selective service.  He loves helping around the house, going out, enjoying the company of his family.   He likes watching movies, enjoys a good TV show and likes to draw.   He also has Cerebral Palsy and Fragile X Syndrome and he receives absolutely no services, no assistance, no help what so ever outside of a small monthly SSI payment.  At the rate doctors and dentists are refusing to accept Medicaid, his access to healthcare is dwindling on a daily basis.  He gets no housing assistance, has no access to programs, receives no food stamps, and has no case manager.   There are no support services available to his family.   He is the ultimate forgotten man.  He is my son.

It’s not from lack of trying on our part that he has no services.  For a number of years after he graduated from high school, he was in a great program out at the Provident Center.  We moved to Virginia in 2005 and after nearly three years of struggling to get him even on a waiting list, we gave up and decided to return home to Maryland, where I had been assured that because he has prior history in the system and because he had been without benefits for so long in addition to his multiple handicap there should be no difficulty in getting him back into the system.   I worked through Service Coordination in Frederick where not only did they remember him from our living here before, but these lovely people were extremely helpful in getting pulling his records, getting paperwork to me to fill out and providing me with a list of places that did day service care.  These hardworking people informed me that his records were still in the system and that there should only be a couple of months before he was back in a day program because he would immediately classified as critical need having been without services for so long.   We received a letter notifying us that his DDA waiver status was under review within 30 days of returning to Maryland along with information giving me contact numbers to call so that I could get him hooked up with a case manager.   He and I took a tour of the ARC facility on Florida Avenue here in Hagerstown, they made copies of all his records and IEP’s that I had brought with me and I was hugely relieved.  Finally, he would be back in a program where he could spend the majority of his day, I would not have to worry about him, and he would once again be back feeling like a productive person, proud that he had a job.  We had a meeting with a case manager who continued to make us feel as if we had made the right decision coming back to Maryland and this lovely helpful caring individual visited with us in our home to meet Robb and spend time working on a plan.   We once again outlined our circumstances, that not only is Robb multiply disabled, but that I, his primary caregiver have some health issues of my own including a disability, his grandparents are both nearly 80 and with his only full sibling living over 2,000 miles away, he definitely would be classified as critical need for services.   We should have nothing to worry about and this deserving young man who has been without even the most basic services would be well taken care of.

And then the door slammed in our faces.   Funding has disappeared left and right, and now even what small amount support we did have is gone.    There is no funding available for even a limited day program for him.    It’s all gone, every single funding cut directly affected him and I am sure, countless others just like him, the disabled adults who live at home with their parents or a sibling.    He is finally, on the DDA waiver waiting list, but obviously so far down that he’ll be in a nursing home due to old age before he will ever see any benefit to that and is in danger of probably being removed from that as well.    And in spite of the best efforts of his case manager, all efforts to get him classified as critical need have dried up and blown away.  Awhile back, we were informed by letter that he now no longer even has case manager services.   All he now has is me to be his voice against a system that has forgotten him.

I ask you, what does it take to classify somebody as critical need?  He is 29 years old, he is multiply disabled and he has absolutely no services.   His SSI wouldn’t even support him should anything happen to me and he is so far down on the lists for care, he’ll most likely be warehoused and forgotten in an institution when  I pass away because once again, he’s a forgotten man, with needs not big enough to be noticed by a system drowning in budget cuts.  He has no place to go during the day; nothing to do that makes him feel as if he is a productive person outside of the house.   No people to socialize with outside of his small immediate family.   He cannot take a bus to attend activities because he cannot read to know what stop to get off on and would require an attendant.   For the last year and a half, my husband worked one shift and I worked another so that he was not alone for more than a couple of hours a day.  As my husband’s schedule and work location have now changed, I have quit my job in order to be home with him because abandoning him to sitting alone in the house for 9+ hours a day with no interaction is unthinkable to us and because, as it has always been, I am first and foremost, his mother, totally committed to making his life the best life it can possibly be.   The loss of income will be crippling, yes, but he is my child and without so much as even the most basic benefits available to him, I am doing what I have always done, which is everything in my power to make sure he is cared for in the safest most loving environment I can provide.   I, his primary caregiver am a cancer survivor with disabilities of my own, over 50 with no support from the system at all and it’s highly unlikely I will ever again be able to find full time employment because of my age and disability status.   What is going to happen to him if my cancer returns?   I have no clue where to turn or even who to call to find out what if anything we are entitled to, what can be done to move him up the list, what benefits if any are available to us to help provide him a warm and loving home here with us for as long as I can still physically care for him.   I’ve tried UCP here in Hagerstown; they won’t even return my calls or emails.    That is just a quick snapshot of what our situation is, one that is echoed by countless others in our same situation.  It may not be important enough on its own, but magnify it by the number of other people like myself who are caring for a disabled adult child and it becomes a terrifying image of abandonment by a system that was put in place to help those very individuals it has now turned it’s back on.

There are things that I don’t even know if anybody involved with the massive budget cuts have even considered.   Things like what will happen to my son and the thousands like him when their sole caregiver dies or becomes so critically ill that they are no longer able to care for their adult disabled child?  When that caregiver cannot even get a return phone call or email when they are reaching out for assistance from the very agencies that were set up for just that purpose?  Or when that caregiver needs to chose between making sure there is something to eat or the rent gets paid or the heat doesn’t get turned off because they have had to quit their job in order to make sure their adult child has the care and attention they need because the system that should be there to help either has endured so many budget cuts there is no room for those people like my son or they’ve closed their doors all together leaving no place for any of us to turn.

I know that there are many other families in our situation and but I also know that other families receive additional support to help care for their disabled family members.   I haven’t a clue where to begin to look for these programs because, apparently, as budgets are cut and benefits are dropping left and right, the sources of information are being closed down as well.  Leaving parents like myself without a single place to turn to.   And the few agencies that I know of to call can’t be bothered to return phone calls because they know they can’t handle one more person in the system or worse, because they just don’t even care.

It is people like my son that you hurt the most when benefits for the disabled are cut.   And people like my husband and myself, who struggle daily with the difficult choices only parents like us can understand and making the choices we’ve had to make, such as doing away with the second much needed paycheck our household needs in order to provide the care for this bright faced young man who has been totally abandoned by the system, that silent majority, those without massive medical needs, but needs all the same.    He has the same needs and rights that every other person does– life, liberty and pursuit of happiness.  These are the very basic civil rights that all citizens of the United States are entitled to.  Show me how he can obtain those when you all cut the very programs that are the lifeblood to people like my son.   I find it very difficult to justify all the monies that are sent overseas or that are spent on programs outside of the United States when citizens like my son have nothing.   When I read of yet another call to send billions in aid outside of our country and I know what the people in my identical situation are going through, I get angry.  Angry at a system that has abandoned its own citizens.  Yes, what happened in Haiti and Chile is devastating.  But what is happening here, on our own shores is even more horrible because of the global blind eye being turned to a need at home that is very deep and has been going on for decades without notice.  Citizens of this country are doing without, are having what few avenues they have had for help disappearing, of having no possibility of having what every citizen of this country is guaranteed by our constitution because our tax dollars are going elsewhere, inside and outside of our country.

I ask you to take a look at the picture at the top of this letter again for a moment.   This eager bright faced young man was a credit to the program he was in, his records speak for his abilities to contribute and that program made such a huge difference in his life.   And now that is so far out of his reach, it’s not even funny.  It seems that all of you have turned a blind eye to the need for day time services, the need for additional support for the parents that love their children and are doing everything in their power to provide for them.   There is no assistance for those parents to help them keep their adult disabled children in the home that makes them the happiest because I know I am not the only parent who has made the choice between child and job in this circumstance.  When monies that need to be providing services for our disabled citizens are whisked away and all we read about are the billions of dollars in aid that are going overseas, it’s very hard to not rise up and question why, why have you forgotten this young man and countless others like him along with those of us who sincerely want to do what is best for our children, small or adult, to keep them home with us as long as humanly possible, out of an already overburdened system and who are now doing so alone.

Granted, my son does not pay taxes or vote.  But I do, his step father does, his grandparents, his siblings, aunts, uncles and cousins do.    And then next time yet another funding cut comes up, or another program is on the chopping block, I want you to think back about this letter, remember the face at the top of this letter and give pause for thought.  I know that my letter won’t work miracles.  It won’t provide me with any additional assistance or get my son a slot in a program.  I’ve accepted that and I am not asking for hand-outs.  I will continue to do as I have always done, be my child’s advocate and protector, be his voice in the darkness of this situation and make his life the best life it can possibly be.  What I am hoping, however, is that this letter will put a face and a name to a situation that doesn’t get the attention it deserves and never has.  So that the next time votes come up and more cuts are proposed to care for the very citizens in this country that need the care the most, you’ll take a moment, perhaps remember that face and his name and reconsider where this country’s obligations really belong.  Not outside our shores, but right here at home.  Protecting those citizens who need it the most, enriching their lives and allowing them the dignity and sense of pride in being able to contribute and feel needed and important.

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