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.
