I have a complicated medical history, as does my son. The piece of the ACA that I was most excited about was the part where “pre-existing conditions” would still be covered when you changed insurance companies. The second most exciting piece was the elimination of the “lifetime cap”. If Orion had stayed on the same insurance he had from the day he was born he would have reached that lifetime cap long before he graduated from high school. In fact, he may have reached it before he started kindergarten!
My list of Doctors, grouped by specialty, looks like the yellow pages. I don’t have a geriatric specialist listed……yet. We see the ophthalmologist, the orthopedist, the allergist, the psychologist, the internist, the cardiologist, the GI specialist, the pulmonologist, and the surgeon at least once a year. Given that some of those specialties apply to both of us and that several of them involve ongoing appointments it is not unusual to average one lengthy doctors appointment a month. Add on the extra trip for lab work or radiology and we exceed that.
My schedule has always been complicated by unpredictable demands. Both Orion and I have been in physical therapy which can be anywhere from every other week to three times a week. I have weekly allergy shots. Orion’s occasional hospital visits can go anywhere from 3 days to 3 weeks (as can mine.) There are also meetings with the county for Orion’s funding, meetings with the program staff to set up goals, meetings with public health professionals and social workers. Then there are incidental things like taking the wheelchair in to get the brakes adjusted.
It’s difficult. As a single Mom holding down a full-time job isn’t in the cards for the long-term. Even when there’s been another adult in the household, the demands of my life interfere with the expectations of employment. My projects and volunteer jobs have also been disrupted by the demands of Orion’s health, and mine. Part of the reason I’m so good at delegating is because I can promise it will get done, but I can’t promise I’ll be there to do it. I’ve done a lot of supervision on the phone from the hospital. I’ve made a lot of phone calls on the way to or from a doctor’s office.
As a strong supporter of ANY kind of revision to the health care system I wasn’t too upset when the county letter came saying, “your insurance is up for review, you will not be insured after December 31. Please sign up for the ACA.” I was unhappy about the computer problems and frustrated with getting booted out of the system but I managed to make a successful application as of December 17th. The computer said I qualified for help from the state program – MNsure – and that they would contact me.
Ok. I figured I was good and would hear from them before the first of the year. Not so much. I started calling early in January. MNsure couldn’t even see the application. Apparently the federal computer wasn’t speaking to the state. About a month after my original application was accepted I found someone who said, “We have the application, you should receive a letter asking for proofs.” Now I’ve been insured by the state before and I know what that looks like so I asked what specifically they needed and faxed it in – to both the state and the county.
Funny thing I never, ever got a letter from the state asking for those proofs. Apparently the county and the state aren’t speaking to each other. One side has to actually scan the proofs into the computer and the other side has to analyze them for qualification. Both sides agreed they had received them, they just weren’t in the system. My proofs still weren’t in the system in February when I went to Pantheacon. They are in one system, but the other system doesn’t have access to them. They seem perfectly fine and you clearly are going to qualify but a determination hasn’t been made yet. Every week I call and every week I get some version of, “I don’t know what’s holding this up.”
In the middle of March, literally 3 months after my original application, I am finally given the news that the case is processed! I have been given an insurance affordability number. Theoretically they will send the options for insurance plans that I can choose from and there will be an amount listed that will be my monthly payment. None of that appears in the system. Isn’t that strange? In fact, this case that has an approval number issued in March, that I’ve been calling about every week, seems to have been closed in January!
MNsure asks me to go back to the ACA website and reapply. Now I’m looking at the March 31 deadline and again the system is slow. I have to establish a new file, new log in, new passwords and I am guessing at the taxes from 2013 (which I still haven’t done) rather than reading the form from 2012. Eventually it goes through and again a note saying I’ll hear from the state. (I still haven’t received anything in the mail from the state!) I’m following this case much more closely and 48 hours after I make the application on-line I’m on the phone again.
Yes they have the information from the federal system and yes they will need proofs. I asked them to refer to the original case, since the proofs are actually there already. I asked them to reference the old case in the notes for the new case. I asked them to especially make a note that the original date of application was December 17, 2013. I asked them to please expedite processing the new case. None of that is unreasonable. I’m trying to establish a case for them covering my medical costs for the last 3 months, but that’s not today’s battle.
I call again a few days later. Yes I have a case, yes it’s been approved but again there is no information about which plans and what co-pay. The second case has stalled out in exactly the same place the first one did. I have returned to limbo and I’m not happy about it. Apparently I am the hole in the computer program and it’s going to take an IT guy along with the case worker to hand push this thing through the system. Stupid computer. I asked to talk to IT weeks ago, but everyone assured me just reapplying would be sufficient.
As of April 1st Success! I have some kind of insurance approval that’s real. (I STILL haven’t gotten anything in the mail and I’m not convinced this isn’t a joke.) I haven’t got a plan, but I do have the insurance billing code from the state. So last week I ran to the pharmacy and to any doctor I could get in to see (and Orion’s appointments as well). I’ve got another week of appointment catch-up and the rest of the month to work on addressing a shoulder injury that will require some tests and physical therapy. All the things I didn’t dare do out-of-pocket. Hopefully by the end of the month I’ll actually have an insurance plan and be able to proceed with what the tests I took in December recommended. Most of those need prior authorization. We’ll see.
There comes a time in most parents’ lives where they get to take a deep breath and say “What do I want to do with my free time?” Sure there are breaks where you get a babysitter, but that’s not quite the same. It’s not even the time where maybe a weekend trip without the teens is conceivable, although you continue to check in and worry about what you’re coming home to. No, I’m talking about the kind of freedom that means you don’t have to be accountable for your actions to anyone but yourself (maybe your partner) and the law of the land.
I’ve certainly seen and heard the horror stories about adult children returning home. Most of the time even that doesn’t curtail the freedom to come and go as you choose. Even when there are grandchildren involved, usually there is still an option to opt out for a night on the town.
I recognize that we still parent our adult children. We still worry that they are eating right, paying their bills, gainfully employed and in good relationships. We remain “on call” for any and all emergencies real or imagined. But on a day to day basis, once the kids are out of the house, arranging our lives to accommodate their needs kind of stops. Unless you have a child with special needs.
I adore my son. He’s a joy to have around. He’s easy going, stays out of trouble, and pretty much keeps himself entertained. He likes being out and about and enjoys meeting new people. But he’s 23 and I still can’t leave him home alone.
As much as I’d like to see Orion become independent the reality is that’s highly unlikely. If he would work to maintain his relationships on his own (and with Facebook he’s making some improvements in this area) I could see the possibility of his finding a roommate who’s abilities complemented his own. Orion would like to get married and have a family and a wife could certainly take on some of the responsibility, if finding one was as easy as friending someone in social media.
My reality is that I will be Orion’s primary caretaker for the foreseeable future. I don’t get to have a “post child-raising” life. What I do get is an occasional weekend of respite. A set period of time where someone, family member or a special facility, takes on Orion’s daily care. I still have to be “on call.” I can’t fudge the edges of the agreed upon time frame. I still have the responsibility of the overall health and well being of my son. But I get a deep breath.
Respite is incredibly important for anyone doing 24/7 with a kid. When your child has special needs, the night out with a babysitter becomes a much more involved process. When your special needs child becomes an adult, the available pool of “sitters” becomes smaller and harder to screen. I have to find a place that can accommodate Orion’s needs, a staff that is relatively competent and at least trustworthy, and something that he’s going to enjoy.
I am incredibly fortunate in this regard. Every once in a blue moon I can convince my ex to take his son for an overnight. It’s not the best choice. Orion is often not given a bath, he is hugely limited in mobility and the over all environment can be extremely frustrating. But chances are good that for 24 hours Orion won’t starve or get hurt and the ex at least knows the Doctors if a medical emergency arises.
My parents have also been a resource for respite. Orion loves it there and they do take good care of him. The problem is that it’s a 3 hour drive there and back on either side of whatever time I need. I enjoy the visit too, but when you have a limited amount of vacation that extra time really cuts into the “time off.” My parents, like all of us, are aging and as easy as Orion is, dealing with his needs can be physically demanding. As Orion ages and respite opportunities decrease, so do my parent’s availability.
This weekend was none of above. I live in a county with a program for people with special needs called “weekend ventures.” They take a bunch of young adults for the weekend, put them up in a hotel and take them on an activity. This weekend was ValleyFair Amusement Park. Orion loves seeing his friends and being away with peers. I love having a weekend off.
Distance makes the heart grow fonder. Having a break, a sleep in, and a night on the town makes it easier to go back to our daily routine. I can’t tell you how grateful I am for the respite. The thing is, most of the stuff I did, Orion would have enjoyed too. Go figure.
I like to hang out with all different kinds of people. I have used the term queer to describe myself because I am comfortable with people who see themselves that way. I feel like I fit in with GLBT, Pagan, Multi-ethnic, counter culture fold. I am comfortable being myself in environments that tend to be inclusive and nonjudgmental.
I recognize what it feels like to be alone in a class and discriminated against because of it. I was bullied mercilessly in Jr. High School. I have experienced discrimination as a woman, because of my weight, and in relationship to my special needs child. I have had nasty and rude comments directed at me because of all of those things. I have also traveled enough to have experienced being the only white, only tall, only large female person in a culture where I didn’t have either the language or the cultural background to really get by. And I have been treated in such cultures as “not quite civilized.” I’ve been excluded from groups I could have contributed to simply because I didn’t have the appropriate credentials, regardless of my experience.
I also know privilege. I take advantage of doors held open and offers to carry my bags. I have been moved to the front of the line to accommodate the wheelchair. I have been accepted into business establishments because of the color of my skin and the way I carry myself, rather than being watched like a criminal. It is not infrequent for me to have extra space, because people are reluctant to squeeze in past me or next to me. I know I have an easier time with social services for my son simply because of my class and education.
I have an advantage because of my broad travels, reading, education and olive toned skin. I can pass in places many white urban Americans would be less than welcomed. People often assume that I am “one of them” and if they are not explicit in asking I do not correct them. This holds true not just in ethnicity, but also with “shop talk” in specialty careers. I have been mistaken for a nurse, a teacher, a social worker, a psychologist, an artist, a musician and before I had kids a parent. I fit in, and if I really don’t I’ll often bow out. I’m not trying to fool anyone. I just “get it.”
I appreciate being with people who “get it.” I know talking parenting is different with other parents of special needs kids. I know talking about medicine or life and death issues is different with other cancer survivors. I know that being with other women is different than being in a mixed group. Even being with a group of women “of a certain age” is different than being in a multigenerational group. Talking spirituality with other Pagans is different than talking spirituality with Christians or Jews or Muslims. Shared experience does count.
So how do we graciously allow ourselves exclusive space? When is exclusion appropriate and when is it objectionable? How do we determine exactly how exclusive we need to be?
I expect I’ll write more on this, but I’d really like to encourage you to leave comments, and to pass the word to anyone you might know who would like to get in on the discussion.