... and what a year it has been. I have had to ask Ben to promise me never to turn 18 again. (And he agreed.)
Ben is a junior in high school, an accomplished artist, both in graphic arts and in pottery. He loves to hate the frustrations of bowling without bumpers, he adores his iPad 4--especially its movie feature, and this year he fell in love with Despicable Me I and II and the Minions that go with it.
So much of what went into Ben turning 18 was 'about' Ben, and about the services he is to receive, first as a young adult (18-21) but also about life long services and service levels that were established in the multiple meetings that he and I attended in order to determine which services he qualified for.
What was hard about the process, apart from the tiresome felling running a metaphorical marathon in chilled molasses, were the meetings that involved Ben. On four different occasions we met with persons from the county long-term disability intake people (IMAGINE!), the court visitor, and the social security administration, essentially to establish what Ben CANNOT do, I understand the deficit model is a vehicle for establishing needs and subsequent services, but I regret Ben having to listen to a long line of questioning which one of necessity must answer as if it were the worst day of Ben's life in order to establish a life-time service level that will adequately meet his needs, even on the worst day of his life.
Looking back, I should have brought ear buds and iPad (with movie + games) to the four intake interviews, so he would not have to sit and listen to litany after litany of what he cannot adequately do. I caught up to that fact at the last interview with the court visitor.
At each interview, he was required to be present, and since they were in close succession during the fall, I had a significant amount of emotional fall out to deal with from Ben after each process.
Ben is generally "happy" exactly in the sense that we, the public, like to think about Down syndrome happiness. However, that general 'happiness' is surface and good social skills combined. It is difficult to have Down syndrome and know you are different, and to hear the deficit model applied to who you are and what you can do and how you are when you are at your very worst behavior, at your least competent moment, and to hear it over and over again in 2 to 3 hour long meetings, discussed every time by your mom and two or three other professionals, some of whom you know from school can be crushing.
That being lamented, we succeeded in securing long term care Medicaid services for Ben, both in terms of respite care after school and also in terms of day programs for the summer and for when Ben is done with school. Many triumphs came out of the August - December seemingly endless process of wading through state and federal services for Ben long term. Ben was a Level 6 (the highest in the state) in terms of his needs assessment, and he is awarded $36,000 of respite, day program, and behavioral health services per year towards meeting his needs.
Instead of me spending out of pocket cash to secure after school services for Ben so I can finish up at work, he will now be in Out and About as soon as their waiting list dwindles down, and that group takes persons with intellectual disabilities 'out and about' in the afternoons after school, to swimming, art, theatre, and bowling.
He will also be in FRIENDS OF BROOMFIELD during the summer for a 9-3 day program where he can take Access-a-Ride (public bus for special needs) to the day program, so he will get a sense of independence in going on his own and coming home on his own.
At any rate, the end of a long semester, and I have a significant part of the year of turning 18 moving in the right direction.
I look to 2015 to
1. finalize his SSI and actually getting that income for him
2. getting a court date and finishing my case to get guardianship for him
3. getting off the waitlist for Out and About and having those neat afternoon experiences for him after school
4. getting a comprehensive eval of Ben and the autistic spectrum issues.
Merry Christmas :)
Ben turned 18 in September, and the list of paperwork to take care of since then as been staggering and it is far from over.
I am hoping that this laundry list of things to do might help someone else who is not quite where I am yet. And for those of you who read this blog for entertainment or interest or awareness or out of sympathy... I wonder if you will make it to the end of it.
Before I go into details of my list, let me say a few words about fatigue related to expectations when it comes to special needs. It is not necessarily the processes or the applications for this or that that tire a person. Ben needs long term care, he needs medicaid, I need to have guardianship of him, and it would be really nice if he gets Supplemental Security Income. All those things are GOOD once they are in place. -- I think for me it's accepting the reality of all the things that Ben cannot do and never will do (now that he is 18) combined with a life long expectation (from the time I was probably 12) that once my kids were all out of the nest, I would be done with all the caring for and providing for persons, and actually more autonomously looking towards another 15-20 years of work and then a comfortable retirement with travel and interesting things to do before ending life.
The prospect of having a person to care for ever, always, until one dies can feel daunting. And I am not saying it to get sympathy or to complain, but simply because this territory is unknown, one is getting older and more easily tired, and the 'endless school summer vacation' that is in store for Ben as he finishes high school feels both scary and tiresome... and I am not even really in it yet.
Looking at Ben as a dependent is something one can accept because I see daily all the things he cannot do for himself. I cannot even describe the process of guardianship to him in any way that he could possibly understand the concept of filing papers with the court, let alone what responsibility for him entails, or what it means for me in terms of authority if I do not have that guardianship. All those concepts are forever beyond him. --- Heck, I cannot even drop him off across the street from school and let him cross the street on his own since he is not aware enough to cross a residential street with care. He cannot be trusted with a house key, he can never be home alone, not even for a short time. I have tried it, and if I am gone 5 minutes, there is no telling where he might be when I return.
Now, I have to do the following for him now that he has turned 18 (in addition to the usual stuff I do, including doctors and orthodontics appointments, taking him to school, providing care for him any time I am not with him.)
1. Apply for guardianship for Ben
2. Apply for medicaid for Ben
3. Apply for Supplemental Security Income for Ben
4. Finish process of getting long term custodial care Medicaid Waiver for Ben (He is approved, but the meetings and the processing of all the info is a long trip yet to be completed)
The goal is that by next March or so I should be done with all the paperwork, meetings, petitions, etc and should be settling down to 3 reports per year to 3 different authorities who have to hear annually from me on how Ben is doing.
Guardianship
Many of us with children who are developmentally disabled need guardianship or some arrangement of authority of our kids after they turn 18. Techincally, once they are 18 they are autonomous, and where I have run into issues (and it's only been 1 month) is in getting access to his records (medical, school, SSI application, ANYTHING!) If there is no permission from Ben on record, saying I can look at his stuff, I just can't.
I paid $125 to go to a class to learn how to file for guardianship. I figured it was cheaper than an attorney, and it came recommended from many sources. As it turned out, it was a waste of money, first of all because the lady who was giving the 3 hour seminar was 1 hour late and talked really fast to cover 3 hours worth of materials in 2 hours. Secondly because the material is readily available on the state web site with a clearer 'how to' instruction set than what the Guardianship Alliance provided in their 2 hour (3 hour) talk.
State of Colorado, Probate Forms - scroll down for guardianship
In addition, I have paid $164 to the court to file, and I expect to pay another $300 or so for a court visitor to come to my home in the next month or so to inspect me and my home to make sure it is a suitable place for Ben to live in.
I will write more after the hearing in the Probate Court, which I am waiting for the court to call me back to schedule.
Medicaid
Ben qualifies for Medicaid at 18, ... the kind of medicaid that is for health insurance. However, it takes 2-3 months to process (thanks to the Federal Government of the United States, it is impossible to apply so the Medicaid is in effect on his 18th birthday. You apply after his birthday, usually in conjunction with Supplemental Security Income and the process requires an in person interview, letters from doctors, etc. It is a chore to pull together the documentation for this to fall into place.
Apply for medicaid here.
Long-term Care
Long-term care is care for Ben after he is done with school (when the eternal summer vacation sets in), and I still have to go to work. He has been offered two different waivers by the state of Colorado, one for his physical disabilities and also one for persons with developmental disabilities. We will go with the latter since I need custodial care more than I need a nurse in the home to care for his physical disabilities.
Next week we are doing the SIS evaluation for the long term care. It is a 2-4 hour question and answer assessment meeting where I go with Ben and as many persons as I want along to help assess, to the county intake office to sit and answer a seemingly interminable list of questions about every possible need he might have. This link explains it.
Supports Intensive Scale
This assessment is done once for all and is in place in Colorado for him until he dies. It is extrememly important that this assessment be done well and be done properly. The hints I get is 'think of his very worst day' and answer according to that. Once the SIS number defines the 'level of need' he has, that establishes how much money the state will cough up for him each year, and that is the money that will be used annually for his long term care .
After the SIS assessment, IF the Medicaid has been approved (2-3 months, remember??) we do an assessment that determines what his actual daily needs are for custodial care, and then we contact service providers which will get paid directly by the state (not by me) to do the care taking of Ben. That might involve a day program that is somewhat academic on some days, it might involve some supported employment on other days. And on some days it may simply involve someone coming to the home to watch Ben if I am away. -- What I hear from other people is that it is difficult, even with the long term care waiver, to find providers who will work for the wages that the state offers on its long term care waiver. I have yet to test that for myself, so we shall see what it looks like in the spring when all is approved and we are selecting service providers.
Once that is in place (waiver come through, paperwork filed, service providers selected), I have to file paperwork each year for an annual eval for long term care to make sure that the services in place work for him each year.
Ben might get comprehensive long term care (some group home where he lives apart from me) when he is closer to 40 (he is on the wait list for that) at which point I might be of an age where I can no longer take care of him myself, or where I don't want to. ... or not, who knows?
All this takes a tremendous amount of time, and funny enough, all these state and federal agencies, while they speak well enough with each other to know whether Ben has been approved for Medicaid health care, they don't speak well enough to each other to share any other document, so filing something in one place does not at all mean that it is accessible to anyone else.
I am deeply grateful, I should say as I end, that he has long term care. Just a year ago, the waiting list for long term care was 7 years or so, and this year it is whittled away as more money has been allocated to take care of the developmentally disabled in Colorado. That is wonderful.
What isn't quite as wonderful is the combination of endless summer vacation and endless paperwork ahead, along with the endless dependent care. I do confess that somewhere in my little brain of much fluff, the hardest thing to adjust to is knowing that one will always have a dependent.
Now, I will end with this very different thought. Ben is very definitely a dependent, and through no fault of his own he CANNOT take care of himself, and I am happy to do so. But as I have matured over the years in my 'growing up' with Ben, I find myself very narrowminded and intolerant of fully grown adults of normal intelligence who have made themselves dependent on either other people who support them financially or on the government. It has been such a battle to get for Ben what Ben needs, and yet Ben has such a drive for independence in him and such a desire to do things for himself. For example this morning, he put on shoes with laces and rather than wait around for me to tie them, he spent about 10 minutes trying to arrange the laces in such a way that he did not need me to tie them for him (becaus he really cannot tie shoes himself). -- He TRIES so hard, and he works so hard to not have to ask... and I think, if little man like Ben can so much try not to bother others and not to lean on others when he has so obvious needs, it seems shameful to me that some of us adults have grown up in a spirit of dependency, never emancipating ourselves fully, always dependent on someone else to pay, to get us out of whatever messes we have gotten ourselves into. What a waste of ability and good intelligence when someone like Ben would have been so happy to have had those abilities but just had the misfortune not to be born with them.
I have held off on my blog about government services and special needs because it always seemed to me that it could be nothing but a long rant, or a pathetic whine.
Well, I suppose the time has come for this odious task, though I hope to make it at least marginally thoughtful or at least thought provoking.
If you have a child with special needs, and if that child is at any point in his life ill enough to go to the doctor, even the most secluded and isolationist homeschooler will eventually have a run in with government services.
Ben was born at a hospital in Kalamazoo, Michigan. And as soon as he was born I got a visit from social services. I say this appreciatively. Ben was, and is, chronically ill, and he qualified for Children's Special Health Care Services (also known as the Medicaid Waiver), a state service, which can function as either primary or secondary health insurance coverage. For us, we had parental coverage already, so CSHCS functioned as secondary, which meant that we had no copays and no 20% payments for all those many procedures Ben had in his early years. Thank God!
Michigan, I might add, is an excellent state to live in for support for offspring with special needs, and in many ways I wish we were still there.
What was odd about Michigan was that we had to renew this medicaid waiver once a year. That is reasonable, you might say, since some children, like children with Leukemia and other diseases might outgrow their diagnoses and no longer need to be on the plan. Fair enough, but what it amounted to was that once a year, I had to traipse to a doctor who would document that yes, indeed, Ben still does have Down Syndrome, and then I had to set up a meeting with the person who ran CSHCS, a great lady, Marlene, and she would renew Ben's services very efficiently.
Not so, in 2003 when we moved to Colorado. In Michigan being on CSHCS is a birth right if you are born chronically ill. In Colorado, you were put on a waiting list, and as enough kids died off --yes, I know it is brutal to say so, but such is the case--your child would move up the waiting list for your county and finally get on the medicaid waiver. We spent 3 years in Colorado before Ben was far enough up on the list to be back on the Medicaid waiver (each Medicaid program is run by the state). And once he was, we started all the surgeries that could wait that we had held off on till that time. And it was a lot. He had had surgeries in the meantime, but only the absolutely necessary ones.
Renewal of the medicaid waiver in Colorado is also an annual thing, but unlike Michigan, it is complicated, a long review process requiring multiple bureaucrats to sign off on him, and inevitably every year at some point we are denied, have to appeal, and then finally the insurance is in place for another year. You may think this reasonable, since you do not want to render government services to the underserving, so a process of checks and evaluations seem OK, however, for a parent with an obviously chronically ill child, this annual hurdle is a pain, which perhaps could be lessened by being done every 3rd year for the most obviously deserving cases. --- I am convinced that we have layers of bureaucrats administrating Mecidaid whose jobs are only to make it more difficult to obtain services.... and the existence of which basically mean that fewer deserving families in Colorado get the services they need. -- So the question is: Are we so eager to make sure that no undeserving families obtain services that we are less concerned that perhaps deserving families (like Ben for 3 years) sometimes go without?
In fact, this post was inspired by my recent tango with the Social Security Administrations, and this is just one of numerous cute anecdotes I could tell about my run ins with county, state, and federal social services on account of my youngest son having Down's.
Ben's Medicaid is renewed every June 1st, and every April and May I have another incompetent government agency story to tell. This year, I did the renewal interview in April. The normal process is that a lady from a private contracted company comes to my house, interviews me, looks Ben over to make sure he is still alive, and then stays for 2 hours asking all sorts of invasive questions, establishing whether he still has needs that require renewal. (If you add up her drive time, and the time she spends entering all the info, Colorado spends about 6 qualified man hours per year for a kid like Ben, so probably $120 or more per year for her part of the renewal process).
In addition, every 3 years, I go through the absurd inconvenience of proving that Ben does not get any SSI (Supplemental Security Income... basically social security for the disabled whose parents are below the poverty level). Well, you would think I could just produce my 1040 to show them I am not in poverty, or that different government agencies could talk to each other and send over the information, but NO... it is mY JOB to APPLY for SSI for Ben (knowing I will be denied) and then to bring that letter of denial to Medicaid, and without that denial, Ben cannot get his Medicaid Waiver renewed.
(Let me note here that there are so many forms of Medicaid that if you have heard anything bout Medicaid, you may already be confused, but know, just for now that Ben's medicaid is the Medicaid Waiver, which is health insurance for the chronically ill who are under 18, whose parents live above the poverty level).
So this year in May I get a letter from the state asking for the usual SSI denial letter, saying that Ben does not receive SSI. And I call the Social Security Administration, ask for the letter 3 weeks in advance of when I need it. The lady who answered the phone after a 50 minute wait (with a barking dog and a screaming toddler in the background) assures me the letter will be on its way well ahead of the May 28th deadline, so all is HAPPY.
Excepting, the letter did not arrive, and today was May 27th. So Mamma Bear calls the Social Security Administration back. 1st call after waiting 1 hour: We can fax it to you, what is your fax number. I don't have a fax, but I will call my work, find out theirs and call you back... The person could not wait, so I had to go to the back of the line. Figured out the fax number, and then called back, sat in line for another 50 minutes. -- My new person cannot take a fax number to a fax that I am not sitting next to. I would have to go to the bottom of the line again (another 1 hour wait) AFTER I drive to a location with a fax machine and a phone from which I can call the Social Security Administration again, verify the first fax by faxing back my ID to show it is me there, and then I could get the fax I need to renew Ben's medicaid before June 1st. --- Not gonna happen that day because of Social Security Administration's hours, my needing to get Ben off the school bus, so I could potentially try again tomorrow to drive to where a fax is, call, wait, fax, wait, and finally get the letter and THEN drive to the county office with the letter a day late, and hope that Ben's Medicaid would still get renewed by June 1st.
I don't mean to make this a rant, and I don't want to continue the details of my driving to Boulder in quest of a letter that simply said that Ben does not receive SSI services... SITTING in line at a live place until it was my turn, etc, to procure my letter stating what everyone already knew... Ben gets no SSI... But let me say this... EVERY YEAR, there is some major obstacle in the way of a perfectly reasonable and deserved renewal for a kid who will neither grow out of his Down Syndrome, nor shed his permanent physical illnesses and disabilities. WHY?
And please do not give me the answer that government is just messed up and only private companies can do this. Other countries can do this, and do it well and efficiently. Half of the process of renewing Ben's Medicaid is run by private companies. The process is messed up seriously for this reason--- In the United States we do not want to ever risk giving something to someone who does not deserve (or earn) it, and so we unnecessarily complicate the process to make absolutely sure that the undeserving is not rewarded. In the process we punish those who need the services... but they are usually so busy taking care of their special needs wards that they do not have the energy to protest and try to improve the system. When they finally get what they need, they breathe a sigh of relief. If they are lucky, they have a 6 month reprieve before the whole renewal system starts over again... that is, a reprieve in which they get monthly insurance claims denied, hospital mis-billings, doctor's offices sending bills to collection, to say nothing of obnoxious law clerks from collection firms who intimidate and threaten their credit ratings if they do not just cough up the money themselves immediately,
I used to pile all Ben's bills up till the end of the month and just pick a Tuesday morning when we were not interred in a hospital, and just sit and systematically go through bills from doctor's offices, hospitals, anesthesiologists, surgeons, labs, etc, all these individual billings that were all done wrong and either denied by our job-related insurance or denied by Medicaid for lack of documentation or authorization, etc.
There is nothing more intimidating than a cocky law clerk who has been trained by a collections agency to be as abrasive and threatening and unkind as anyone possibly can be. Collections agencies mercilessly bombard your cell phone, your home phone, and when you finally answer, they make you hold for one of their agents, who immediately is as unfriendly and menacing as he can possibly be, in hopes of intimidating you into paying what is not your responsibility to pay, but you're afraid not to.
Ben's has been sent to collection several times (in spite of the fact that the secondary medicaid insurance should make it impossible) and it takes a back bone to stand up to the extortion that occurs when collections calls you up with a year old claim from a laboratory that misbilled the claim to start with.
All that to say, WHEN you have a very ill child in the hospital for months on end, Medicaid is supposed to ease that burden by picking up copays and co-insurance, but often all that happens is that it stalls payment till the claims are too old (it will not pay a claim over 12 months from the service date)... and then you are stuck not only caring for your ill child, but on your days home, negotiating medical bills that threaten to ruin your credit.
Do I think the system does not work?? Yes, indeed. Almost all chronically ill or elderly in the United States are covered by Medicaid or Medicare eventually... since health insurance is absurdly tied to your job, once you are long-term sick, when you need it most, you usually lose your coverage. It is, at its root, an absurd system .
At last check, I believe that 45% or more of all medical claims in the United States end up being paid by the United States government. -- The other half is paid by private insurance, which also, in my humble experience is designed not to pay if it can help it, and so the lot of the parent or other caregiver of the individual who is chronically ill is largely to navigate a sea of paperwork to get the two parties who ostensibly should be paying the bills of the ill person to actually do that which they contractually are obligated to do.
Yes, if you are independently wealthy, of course this is not a problem. But most of us are not. And when we have the misfortune of having a chronically ill family member.... a long term situation that will not go away until the person passes away, for many, many people in the United States, the system does not work, or rather it works poorly, it is stressful, and at times it totally fails us at the absolute worst moment --- when we need it the most.
OK, I don't know if this was a rant or a whine, but honestly, this is something I have dealt with for years. Getting Medicaid renewed is an absolute pain in the posterior... getting either insurance to pay is like pulling teeth. Folks, it need not be so. Why can't the United States ever look at what other civilized countries do and perhaps learn a thing or two and give a break to the disabled that inhabit her shores? I understand not wanting to support those who should and can support themselves, but for crying out loud, the elderly, the severely disabled, the dying.... surely we can recognize that they are not free-loafers.
