Friday, May 05, 2017

Community means all of us.

When Joey was little and we were just starting out in special education, Joey's teacher told us to always bring a photo of him to the IEP meeting. The point was to make sure that no one lost sight of the fact that Joey was wasn't just a name on a piece of paperwork. He is a human being.

Being me, I made a Powerpoint. I started with slides about who Joey was as a person- what he liked, things he was good at, and lots and lots of pictures. This is the child we are trying to help. Then I laid out what help he needed and what we felt his goals should be.

I still make them for big IEP meetings. It is important. You have to look into that face and tell me why you think he deserves less than anyone else. I no longer have to take those Powerpoints in to the meetings, though.

I take Joey.

This is HIS LIFE. He deserves it, and has the same right to it, as everyone else. The same as you.

Yesterday, the House of Representatives voted to repeal, instead of analyze and refine, the law that gives my Joey the opportunity to have health insurance. In this country, where healthcare is treated as a commodity and luxury for profit, health insurance is an absolute must for everyone. When profit is the bottom line, costs spiral wildly, and every middle man adds his share. This includes the insurance itself- we add our money into a pool, and the more people in the pool, the less the risk per person for anything they might need. The insurance people then invest that money and hope not too many people need too much, because they want to profit. If too few healthy people are in that pool, the whole collapses. Basically, for-profit healthcare is a big pyramid scheme, and people who actually get sick are at the bottom of that pyramid. Without insurance, you go broke when your health hits a hiccup; you may even die from lack of care.

Or people born with issues that insurers see as medically significant. Not all "pre-existing conditions" are from people making mistakes. As we learned before the laws changed to help all people, autism is a significant pre-existing condition. Because it is a pervasive neurological condition, ANYTHING can be connected to it, especially by the insurance company, who seems to think their opinion is far more important than the expertise and opinion of your doctor in what is "medically necessary."

The House bill converts Medicaid to block grants with federal spending cap. That means the long waitlists for people like my son, waiting to get the healthcare assistance they qualify for, will get longer. When that block runs out, people like my son won't be able to access medical care at all.

Let's be clear: If you cannot afford something, you cannot access it. It is not available to you. There are lots of big mansions out there, but they are not available for me to live in, because I cannot afford to pay for one. A weekend at the beach is out of my reach because not only can I not pay for it, but I would need time off from work to go, and transportation to get there. Having life-saving and life-changing technology is useless if those who need it cannot access it.

When we chop healthcare and community supports, we are chopping Joey's opportunity to be an independent person. We restrict the possibility of him becoming a tax-paying member of society; and we need those taxes to help others in our community who need our help.

That is what communities are for. That is what they do. They bring us together so we can all help out. We are all in this together.

This is the young man you want to throw away, because he is autistic. He has a pre-existing condition, and thus can be denied health insurance, and thus denied healthcare access.

If you think my son, and people like him, are a waste of your tax dollars, I recommend re-evaluating your ideas of community and morality. After all, we should have learned long ago that we all get sick, we all grow old, and we all die. If you think you can face that all alone, without the human community, you are in for a very rude awakening.

3 comments:

VMGillen said...

The healthcare situation makes me much more than mildly nauseous...

I really love the idea of power-point to relay the person over the aggregate deficits. I put together "history" scrapbooks for my son when he went into his IRA - T=the idea was direct care staff could see him as a baby, as a horseback rider, as a roller skater, etc - rather than only a very large young man described as aggressive and with a seizure disorder.

farmwifetwo said...

https://www.thestar.com/news/queenspark/2016/03/29/shorter-wait-lists-narrower-eligibility-for-autistic-kids-under-revamped-ontario-system.html

https://www.tyketalk.com/ We got in quick with the youngest because the elder was there and she was coming to the daycare anyways... eldest was over 6 months.

https://www.thestar.com/news/gta/2017/04/23/110m-lawsuit-targets-ontario-wait-lists-for-developmentally-delayed-adults.html

https://news.ontario.ca/mcss/en/2017/02/13000-adults-with-developmental-disabilities-receiving-support.html they are getting rid of the 2014 passport funding wait list.

http://globalnews.ca/news/2331449/housing-crisis-for-adults-with-developmental-disabilities-grows-in-ontario-families/

https://www.thestar.com/news/canada/2014/04/12/ontario_eliminating_wait_lists_for_developmental_service.html Hasn't happened

http://www.ctvnews.ca/health/group-homes-for-adults-with-autism-unaffordable-and-inaccessible-parents-say-1.2937838 See... same old, same old

Here in Ontario, you keep getting told how wonderful we have it. Wait lists are horrible. From knees to disability. Yes, I can go to the Dr for "free" but there are rules... don't go to the clinic or the hospital... doesn't matter how long it takes to get an appt... they can remove you from their rosters. yes, We can go to the emerg for free.. if you have 8 hrs to sit there. Mental health... what's that??

ESY - extended school year... we can only dream... In school serivces... bursts out laughing...

https://www.thestar.com/news/canada/2015/11/29/ontarios-sheltered-workshops-to-close-forever.html They haven't been replaced. I joined a group of parents - ironically, getting parents out is hard, they don't seem to care or don't want to do - to find jobs. There is no services, they just cut them off with no where to go. Well, you can send them to be baby sat for part of the day...

https://www.thestar.com/opinion/letters_to_the_editors/2015/11/07/in-defence-of-sheltered-workshops.html

Welcome to my world. I would love a part pay/part paid system like the rest of the world... So, I did it myself. One day, we'll go to the US and pay for an MRI for the youngest.... Oh, ASD and other "disabilities"... we don't get neuro appts or other specialists. They send you to the Ped or family Dr. If you get lucky you get the odd child psych appt for meds assessments... usually Fam Dr's do them from psych, to bp to....

Joeymom said...

Considering the waits I have to see doctors, specialists, etc., they waitlists appear to be comparable. I have waited longer in ERs as well. It got to be such a joke around here, the ERs now have big signs that list wait times... but its really only for check-in to triage, not check-in to actually seeing a doctor. If your doctor isn't available, we now have walk0in clinics, but the care is often not par.

ESY and workshops don't fall under healthcare here. The one is under school services (Ms. DeVos will be taking care of that) and the other is a different social program that allows for disabled workers to be paid well under minimum wage. Slave labor is not really work. There are training programs, but those also fall under the education system, not the healthcare system.

Most of my Canadian friends have seen a neuro or developmental specialist for their ASD child. We started at the family doctor, and got referred- you can't just go to a specialist directly here, either. The wait to see said specialist can be 6 months to 2 years... and one we signed up for, we never got off. The reason we got in to Kennedy Krieger was that we suspected a seizure and said so, which is considered an emergency.

Most of the world works on a single-payer system. Yes, they have problems, which is why they need to be analyzed and see how to overcome those challenges in a new system. They are not insurmountable.