Monthly Archives: January 2012

Living Independently with Supports…setting it up step by step, part 1.

Andy's first independent grocery shopping choices

Living independently….they make it look easy, the guys here on the Hill.  The rent gets paid, the pantry is full, and several times a week support people show up to make sure individual goals are being met…. goals that are developing self-sufficiency as well as goals that are just plain fun.  Everyone here seems to be enjoying a rich, rewarding, healthy and safe lifestyle.  So why isn’t this model more common, you ask?  Why don’t more families just find a place to rent and call a moving company?

Ask Patrick’s mom just how easy this is.  Ask how many phone calls she has made this week, how many emails she has written…  To Social Security, or the Department of Public Welfare, or the Pennsylvania Department of Long Term Living,  or the provider agency that sends his support people,  or the supports coordinator that oversees the provider agency that sends the support people.  Ask her how many times she’s made the half-hour drive to the Hill… to bring medication, or a pair of snow boots, or to pick up Patrick for a family birthday party.

Getting set up is definitely not easy, not when it is absolutely necessary to have both Social Security benefits as well as 15 hours minimum of support coming in. Navigating the systems involved can be so overwhelming… many individuals and their families never get past just thinking about the possibility of an independent life. It shouldn’t be this difficult, but it is.

Andy's second attempt (oh well, we kept the cheez whiz and marshmallows too!)

But it can be done!… it’s not easy, but it is absolutely possible for many many people with autism and other disabilities who have not yet taken the first step. It takes the good part of a year sometimes, to get things into place.  But it does happen.  And it already has here… for Ray, Brent, Jose, and Andy.

The funding and support programs for these four guys are in place and functioning, with relatively little maintenance at this point.  They are set up with social security benefits, government waiver funding that provides supports, medical assistance, dependable support people, food stamps, some part time employment, volunteer  positions in the community, and snow boots.  Well, maybe not the snow boots, because they still seem to lose things quite often.

So coming next in Part 2 is a step by step guide of ‘nuts and bolts’ instructions on how to set up an independent living situation for a person with autism or intellectual disability in the state of Pennsylvania.  Once this is all done, there’s still the actual ‘getting along with housemates, new routines, and making my own lunch when I don’t want to’ part, but those stories will follow in good time.

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The In-betweeners: Diagnosed with autism at an early age and ready for independence

Andy and Ray.... Clothes designer meets scorpion enthusiast

We are the In-Betweeners, here at Juniper Hill.  Diagnosed at an early age, we never really had that expectation of ‘fitting in’ with neuro-typical peers, like so many of the newly diagnosed adults on the spectrum had…. those adults who live independently and who are so articulate about how it feels to be autistic, and  lonely, an outcast in society.  That group of people who are educating the general public at an amazing rate….. blogging, Facebook, television, conference presenters, authors, even American Idol.   Our education was geared toward a person with a disability from the start, and we learned early on that we were different.

But we are not really that classic ‘Rain-Man’ image of an adult with autism either, a person in need of complete support and supervision who also struggles with speech and understanding others.

We are in between.  And there are lots and lots of us, many still at home with our families but with the ability to someday live independently, with some support. We may not care that much about cleanliness, but we know how to take care of our personal hygiene and we do it, either independently or with reminders.  We can use microwaves, and make sandwiches, we could learn how to do our laundry…. or get around in a community and take public transportation.  We can read. Really well, in fact. Brilliantly actually, for many of us.  And we are experts on our passions.  Our passions drive us, so much so that we are way more interested in discussing, thinking about and living them…. than we are interested in talking about our autism. The autism?  We take that for granted at this point.

But Dinosaurs?  Insects?  Dog Breeds? Designing clothes? Crocheting giant blankets? Automobiles and keys?  Maps? HALO?  80’s music?  Now that’s interesting!

Brent... with an average blanket

It takes a year… to make a family

Over a year into our project here on Juniper Hill, and the guys are somewhat settled into a routine.  It is a Saturday morning in January, snowy and cold… and we have finished with the morning farm and animal  chores. Brent has made fires in the fireplaces and sits playing ‘Math Bingo’ on the IPAD.  Andy has cooked up a great breakfast on his own… scrambled eggs with cheese of course… but also onions, ham and mushrooms.  Ray is playing acoustic heavy metal music, and no one is complaining.  He is researching information on foxes and dogs on the internet. And Michael is talking about dinner ideas, Saturday is his night to cook.  Jose is with his family at a party this weekend, and Patrick went to his parent’s house to welcome his brother home from Afghanistan.

It sounds a bit like a bunch of college guys, and at first glance it looks that way as well.  Jeans and hoodies, gently worn furniture, popcorn and empty ramen containers in the trash…..and music going, all of the time.  Cluttered bedrooms that could always use a vacuum.

What a difference a year makes…

Just a short year ago... the guys were starting to get to know each other.  They hadn’t really ever cooked a meal, shopped for groceries, kept a house clean, gotten up on their own for a job.  They had never lived closely with peers… real peers…..and they weren’t really sure they even wanted to. As the months went on, they all went through periods of doubt.  Everyone here has ‘issues’.  Everyone here does something that annoys someone else here.  In many ways, it was easier just being home with parents.

But somewhere around early autumn, things started to change.  Two of the guys had already had a serious altercation in July.  That was when we all realized just how much fear and uncertainty was involved in the making of new friends…. and we started to talk about it at dinnertime.  So much trust developed over food!  Within minutes of the incident in July, both guys had been desperate to make amends.  It became obvious to everyone that they all just wanted the other guys to like them, even if the other guys were annoying.  They cared more about friendship than quirks and social missteps. Acceptance and trust, it’s what it’s all about.

Last night, Sunday evening, Patrick came home from being at his parent’s all weekend.  He lives with Brent and Ray in the rancher, with minimal supervision.  His sink was full of dirty dishes, the living room cluttered with Ray’s personal possessions, empty popcorn bags and banana peels.  Patrick and Ray had some angry words, and Ray came down to the other house in frustration.  The rest of us were all there, getting ready for dinner and hanging out.  Within minutes, Patrick came down to the house.  Together in the other room they talked it out, it took all of 2 minutes.  No one else got involved.  Ray went up to their house and cleaned up, and after dinner Patrick, Ray and Brent went up to their house together….  Patrick shared his Girl Scout thin mints that he had bought from his niece, and they polished off the entire box together.

Now that’s family…