Tag Archives: farming

Effortless Inclusion……it could be. it should be.

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Imagine this.  A place where inclusion just happens.

I imagine it can be this way in elementary school classrooms, where children have not yet learned to judge those with differences. That would be beautiful to see!

I wish it worked as well for adults.  Perhaps it does, somewhere.  I see the media spreading the stories of high schools electing prom queens with disabilities, or football players with autism being allowed to play on the team for a day…. nice stories, but I always wonder what their lives are truly like, once they leave school.

In my 30 years of being intimately involved in the lives of many adults with disabilities, in several states from one coast to the other.. rarely have I seen real inclusion while out in the community. And I really really really want to see it, and I want to believe that it is happening.

Instead what I DO see is planned efforts to bring people with disabilities into the community.  In grocery stores.  In churches.  I see them with their support workers, walking around the mall. Present in the ‘community’ with typical people, living parallel lives.

and I see ‘typical people’ make real efforts to be extra friendly to them… for a little while.  Then they turn and go on with their conversations that they were having with their typical peers.  They leave work with their typical peers, they go to happy hour.  They have brunch with their peers at their house on a weekend. They call up and say ‘hey, want to go to the Y today?’.  They tell each other their secrets.

And too often, the person with the disability leaves their ‘inclusive’ community activity … their job, their school, their mall exercise….and goes home. They go home to their house with mom and dad, or their group home, or to their apartment where they live alone. After work they go to the YMCA program for people with disabilities.  Or their support worker will come over and take them to a movie. People from work don’t stop by or call.

Sorry, for being so cynical.   I’ve just met so many lonely people over the years.

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I am tired of defining ‘inclusion’ as the process of bringing the people with disabilities into a society that often is just not that interested.  It is such oversimplification to say the a person is ‘included’ just because they have spent their day alongside a typical person outside in the community.  Parallel lives, that is not inclusion.

I have seen true inclusion.  I see it every Wednesday actually.  Here on the farm, a place where several people who have autism live.  A place that borders on ‘congregate living’, which is supposedly a bad thing.  Just like all those other farms across the country that people with disabilities call their home,  that are being so severely criticized these days for supposedly being isolating, without choice,  and not inclusive.

These people here at Juniper Hill have shown me that there is another way , without really thinking about it at all.  And I think their way is better.

And all those typical people that really haven’t thought too much about including people with disabilities into their lives…. they are REALLY missing out!

So I say… Isn’t it time they came to US?

I say ‘US’, because most days I am immersed in a community of people who are not neurotypical.  And I say…. Lucky Me! It is my community as well as theirs, because having a disability is not a ticket into the club. These folks around me who happen to have a diagnosis… they are way more welcoming and willing to REALLY include all those ‘typical ‘ people into their lives.  There is no judgement here.  In fact, these people I am surrounded by, they spend very little time wishing they were ‘included’ in the typical community.  They don’t even notice who around them has a disability and who doesn’t.

They do not define people by their disability.

Today was our Wednesday Volunteer and Stop by the Farm Day, that we have every week. The way it works is this:  if you want to come to the farm and hang out you have two choices:

You can come at 1030 and work until lunch….  you cut sunflowers, fill birdfeeders, weed, feed animals, clean barns…. mow.  Then at lunchtime, everyone stops working, we gather in the kitchen to fix our plate of delicious food that Jose and Carin have prepared, and we go outside and sit at long picnic tables with our good friends…  and we talk about the day, what went on in our lives this week, the latest HALO/Lego news, the food, and the weather.

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If you did not show up to volunteer at 1030… you can still come. But you must bring your own lunch!  You can come to hang out, because sometimes after lunch we go for a hike… or play Bingo, or just sit around and tell stories.

Here is why this is inclusion..

There were over thirty people here today.  Seven of us live here.  Ten or so people who are part of the autism/disability community showed up to volunteer… so more than half of the people here had a diagnosis….. not that anyone here notices that about each other. Several people here were the staff people for these folks.  (Now, I know officially support people ‘don’t count’ as contributing to inclusion, because they are paid to be here.  But really, it depends on the support person.  Things especially change when you work at the same place for three years.  It’s kind of insulting to think that they don’t really count, these wonderful people who have become part of the family).

And who else was here with us today?

‘Uncle’ Harold and ‘Aunt’ Peggy, in their eighties, they are neighbors on the lane for the summer and doing work around the farm

Dylan, the farm hand who makes sure the animals all get fed correctly and that the weeding gets done (OK, he’s my son…)

Rebecca, who found us last year while looking for possibilities for community service.  Now she just comes because it’s great fun and folks,  and it’s the way she prefers to spend her free time on Wednesday mornings.

Ezra, who is a contractor who is tiling the bathrooms in the top house and who has gotten to know everyone and spends every lunch time with all of us.

Ari, Ezra’s 12 year old son who comes along with her and hangs out on the farm now.

Peyton, the Eagle Scout who is building a shed here as his project.

Peyton’s brother Mike, who helped him out today.

Alison... who is a neighbor that lives in the development across the road and works with one of the Juniper Hill guys on Fridays.  It was her day off  today, and she was home with her 7 year old son.  So she called us up and invited the whole crowd over to her pool.

So the entire crowd, full of Jose’s chili (now that I read this, it sounds a bit dangerous!), loaded into cars or walked over to Alison’s… and swam and sunbathed for two hours.

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Afterwards, Alison drove a couple of the Juniper Hill guys back home. Her 7 year old son Daniel had really taken to Michael (as many young Lego heads do)…. and Michael had invited him over here to see his Lego collection.  The two of them…. Michael (who is 22 years old and lives here) and Daniel… headed up to Mike’s house at the top of the hill while Alison caught me up on the stories of the day… (I did not go swimming… I grabbed the opportunity to be alone here in a quiet house after a very energetic morning of organized chaos with 30 people).

Michael and Daniel returned 20 minutes later, and Alison and young Daniel left.  Daniel went home with one of Michael’s Lego men, just because Michael loves to give presents to people.

And then everyone took a nap til dinner.

That’s a beautiful, friendly, INCLUSIVE day on the Hill.

Check out these other farm communities across the country where folks with autism live! Go visit!   Agricultural Communities for Adults with Autism

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Juniper Hill two years later.. a reflection on what we’ve become

Shelly, the crayfish

Happy Anniversary to us!  Tomorrow is Ray’s 27th birthday… and it is this weekend that he moved into the green house on Juniper Hill, just two years ago.

He moved in with a blue crayfish, giant bins of LEGO/Bionicles, plus one GIANT bin which contained the cardboard /packaging of all of his LEGO/Bionicles …. because they have information on the cardboard that he wants to remember… just in case.

Jose had also just moved in,  to the cottage at the top of the hill where he  joined Brent who had been alone since his housemate of 12 years had moved out three months before. Andy had been visiting for weeks at a time during the summer, and had decided that he, too,  could leave his parent’s home after all, and move out on his own.

And so the ‘core four’ began their life together on the hill…. navigating social interactions  and the well-stocked pantry of available food. That first weekend all together, Ray asked if his best friend could visit for the weekend … and so we met Michael. He became a regular visitor, and moved in some months later while he finished out his last year at school.

October, 2010

We had a plan, my friend Mollie and I.  We would all live happily together and grow giant fields of sunflowers and other cut flowers for bouquets, and we would work the fields with help from all of our other friends who happened to have a disability.  Our flower business would thrive, and we would make flower arrangements for events, wreaths for Christmas, and hand deliver bouquets for all holidays. We would have herds of fiber animals, and after we sheared the alpacas and combed the cashmere goats and angora rabbits, we would process the fiber and spin it into luxurious skeins with our spinning wheels as we sat by the fire on cozy winter nights. And then come spring, we would travel all over the East Coast selling our wares at farmer’s markets…. and we would earn enough money for all the guys to have a decent income, plus become a non-profit and get start-up grants to get it off the ground.

Ready… set… go!

Go?

Reality check.

Live happily together?  But he’s LOUD.  He hurt my feelings. He stole my … _____ (LEGO, money, chips, favorite shirt).  He hogs the TV.  He hogs the computer.  He swears. I hate his music.

Grow giant fields of perfect flowers?  Not if the groundhogs and deer, weeds and stinkbugs have anything to say about it.

Work in the fields? In the dirt?  With bugs?  In the sun? For how long?

The toilet’s broken again…. a gallon of milk, a dozen apples, and two bags of chips just disappeared in an hour…… and there is a mystery $300 dollar overcharge on the Comcast bill.

Farmer’s  Markets all over the East Coast? You mean, like when we are not busy weeding?  Like on Saturday mornings? When we are sleeping until noon because we are tired from our busy week?

It’s midnight and the dishes are done and the kitchen is clean and the guys seem settled and getting along… guess I should write that grant now.

And weren’t we going to learn how to spin?

Sigh….

Here’s what we DO have here on Juniper Hill, after two years.

A growing community of friends who happen to have autism, or other disabilities.  A group of friends who care about each other, who trust each other, and who get together once a week to work for an hour or so, here in the fields and then hang out over a fantastic lunch made by Jose, who loves to cook and feed people.

A group of WWOOF (http://www.wwoofusa.org/index.aspx) volunteers who help out on the farm when the guys just can’t (those bugs and that dirt….)

A medium sized field of flowers, but sunflowers only, kind of weedy.

A place at the local West Grove Farmer’s Market, which runs on Thursday afternoons…. only. Close to West Grove’s ice cream shop, the library, and Chinese restaurant… for market breaks.

the market ….where we sold all of the sunflowers that the groundhogs didn’t eat. and where we show off our future with fiber (cause this coming year, the guys are really going to learn to love making things out of felted alpaca! Right?!)

One toilet fixed, one more to go.

No start-up grants or non-profit, went back to working instead.  So I now help other people with autism and other disabilities, to set-up their own independent housing in the community.  I have a regular paycheck, and it pays for fencing.

And here on the hill are a group of guys who have learned to live together, play together, share their space, their food, and the TV. They take care of the farm animals, do daily farm chores, learned to cook, have great support staff who have hung in there for the entire two years….

they have lost a ton of weight and learned what healthy eating choices are, found volunteer jobs and paying jobs… and they are happy, self-confident adults who are great ambassadors of autism when we are out on our many wonderful trips together, courtesy of AALIVE (http://www.aalive.org)

It was always supposed to be about the GUYS.  And it is.

And no, I haven’t learned how to spin.  But the WWOOF volunteers came with a spinning wheel and cozy winter evenings are coming up… who knows?

Autism and the extraordinary power of peers

Andy’s Chicken Cordon Bleu

Motivation…. it started out as competition, before they cared.

Brent cooked independently …. and got lots of attention from visitors for it.  The other guys started cooking.

Ray brought home a paycheck and bought himself his own junk food and CD’s.  The other guys requested that their support workers take them job hunting.

Jose made a conscious effort to change his eating habits and lost a ton of weight…. everyone who knew him before showered him with compliments.  The guys started dropping waist sizes and talking about food choices at dinner .

Andy volunteers at the library and checks out books that he reads each night  after dinner.  The others wanted their own pile of library books.

Before they really cared about each other, they just wanted what the others had. Their motivation began as a competition… for attention, for money, for books. It got them off the couch temporarily, but that type of motivation just doesn’t go very deep.  The anxiety, anger, melt-downs, sensitivities, intolerance, mistrust… still front and center.  They just had more books.

Ray is working on his art and is showing it off at market this week

Almost two years ago…the guys started out as a group of pudgy overweight, unmotivated, anxiety-ridden gang of couch potatoes.  Except Brent… older than the others by at least 10 years….healthy, fit, and motivated to work from sun-up to sundown, had hobbies and filled his leisure time…  He has lived here on the farm for 18 years.

Brent has most of the same difficulties as the others …. anxiety and melt-downs, sensitivities and intolerance.  But he doesn’t have the mistrust that the others have, and his behaviors are rarely directed towards the guys.   He really likes his housemates, and he was the first to show that he cared, no matter how much the other guys were acting out.

Brent is also quiet…. he sits at dinner listening, rarely contributing to conversation.  Everyone else battles to get a word in. And every other guy has SOMETHING about him that annoys the others. But Brent?… there appears to be nothing about him that is annoying to the other guys.  So Brent became the one that everyone bonded with first.  Coming to his defense when it seemed like he might need it, always watching out for him and making sure he got his share…..they TRUSTED him.

But they also respected him.

They see how hard he works, without complaining … ever.  They can see that he doesn’t need to be begged, prodded or lectured to about adult responsibilities in a household.  They see that when the arguments are about whose dishes are in the sink and who should load them, he just gets up and does it.  And they see that he earns  a decent amount of money each week because of the extra work he does.

They also see that he keeps most of his personal ‘stim-stuff’ to himself when he is out in the community.  No one forces that issue. He wants certain things from those he comes in contact with… so he makes an effort to understand the people he meets and has learned to express his needs in a way that can be understood.  His desires are rarely ‘typical’…..they usually involve checking out the heating systems in people’s houses, or asking questions about their car keys.  But he has learned to do it in a way that endears himself to almost everyone he meets.. EVERYONE loves Brent.

Brent has been selling blankets every week at the farmer’s market

His maturity and work ethic shine in everything Brent does.  He makes the other guys want to better themselves.

There is a turning point in young adulthood, with or without a disability.  A point at which your motivation changes from doing something because someone older expects you to, to acting on something just because it’s the right thing to do.

A few weeks ago, Jose started getting up in the morning on his own, giving himself an hour before his staff showed up. He started making his own coffee, and real homemade oatmeal from scratch (with frozen strawberries blended in yummm), the way he has been taught over the past year.  and when he is finished now…. he loads his dishes and checks to see if the dishwasher needs to be run, and TURNS IT ON if it needs it.

He turns on the dishwasher now, just because it needs to be run. Seems like a small thing, right?

It’s not.

Jose cooks lunch for all of the volunteers every Wednesday

Jose’s Birthday September 2010

Autism and agricultural communities: a reason for keeping it small

So much talk this week about agricultural communities and autism… the autism blogs and listservs are buzzing about the  FRED conference that just happened in California (Farms and Ranches Enabling people with Disabilities).  There has been an overwhelming response to the conference nationwide.  It is so inspiring to see some of these long-term communities continue to grow and succeed… check out these agricultural communities of adults with autism.  Families are talking about working together with others to create their own farm for their family members.  Again and again, the talk ends up focusing on the lack of funding, the lack of support for projects like these from the very organizations that should be helping.

For those of us whose lives are affected by autism, we ‘get’ why the farmstead model is such a good option when thinking about a life of independence for many adults on the spectrum.  Tranquility.  SPACE.  Animals.  Nature.  SPACE.  The freedom to be who you are … free to hoot, jump, pace, flap, stim, and talk talk talk …. without judgement.  The freedom to CHOOSE when and how you want to interact with others.  Life on a farm does not have to be isolating, there can be many opportunities for socializing with very little effort.  But having that CHOICE to be alone when there is a need to recharge without interaction with others… that choice is priceless for many with autism.

But since the 1970’s, the movement has been towards non-congregate living for people with disabilities.  It became the accepted belief that a life mainstreamed into society was best… that the ‘least restrictive’ environment was an environment where the individual with a disability was part of a community that consisted of mainly non-disabled individuals. The pendulum had swung all the way over to that other side, and now for many years the government and other funding streams have not wanted to consider new ‘congregate’ settings (settings where non-related people live together)  as viable options for independent living.

My own personal (and very controversial) belief is that this has been extremely over-simplified… after 35 plus years working in the disability field and 15  years in housing…. I have seen many many desperately lonely people living in the ‘community’ with few friends or connections and whose families have long since let them go.  On the other hand, some of the happiest people with disabilities that I have met either live or work in fairly large congregate settings with their best friends. It really depends on the specific nature of the ‘community’ or the ‘congregate setting’, and the quality of the support people in each. It is an oversimplification to call one situation ‘good’ and the other ‘bad’.

The guys at Juniper Hill are very attached to one another, yet also very different from each other;  they share only limited interests.  And they miss each other whenever they are apart. They are also attached to the 10 or so people who come regularly to visit or help out on the farm.  They all like each other because they are wonderfully kind, interesting people, not because they are autistic.  What right do we have, as a society, to tell them that they can’t live together just because they share a diagnosis?

courtesy of Handi-crafters

At any rate, it has become evident that creating an independent living situation with as little assistance from the government as possible may be the most practical and sustainable path for the majority of families right now.  With six guys living in close proximity here on the Hill, it borders on ‘congregate living’ in some eyes, and chances are we would have to argue this point if asking for government support for the project.  Our original plan here on Juniper Hill….. to create a working farm that would provide employment and a meaningful day for a number of individuals…. has now evolved into a simple independent living situation where the people living here just  rent their home and pay most of their bills with their social security checks.  They are learning to work on a farm, and this work will at least provide them with their spending money, and hopefully more, eventually.  It is a replicable model for many families…. and that was our goal.

We haven’t done any fundraising (yet) and the farm is not a licensed facility.  However, these guys are lucky in that they do have some waiver funding that provides the support people that come in at an average of 15 hours a week for each guy. It’s not very much but it gets the shopping, laundry, cooking and cleaning done and leaves time for volunteer jobs and even some leisurely trips to the nearby University town and weekly stops at the local library. A couple of times a month, the  AALIVE organization provides some amazing fun trips. And the guy’s social circle is continually growing, with friends dropping by to help out on the farm, just because they like being here. We recently registered as a host farm with  WWOOF, an organization that links volunteers to working opportunities on farms. We see this as an excellent way to provide some of the  supports for individuals who lack funding, while at the same time providing a valuable and enriching experience for volunteers. In just two weeks, we already have a local WWOOF volunteer coming weekly, and three more scheduled for long-term stays here.

So we think that we will just stay this size…. there is still so much room for growth in other ways, and that is enough.  And we are really looking forward to sharing ideas and guiding other families through this process.  Life is Good… here on the Hill!

Living Independently with Supports, part 3: Happy support people

(Want to know what happened to Part 2?  Check out the ‘Facts and Figures’ page of this blog…. You’ll find lots of specific information on getting started!)

Patrick with JR on our fall crabbing trip

Today was the monthly meeting of the Juniper Hill gang… all of those people that hang out here on a regular basis…  the guys plus their support people.  Ed came early to bake chocolate chip cookies with Andy, it looks like it is a new tradition for meetings except they are going to have to double the recipe, at least!

Ed and Andy in the kitchen... it's potato soup night!

JR and Patrick brought in wood, Brent and Mindy built a fire. Liz and Ray planned tonight’s dinner while waiting for everyone to get their tea, coffee, and glasses of milk (to go with the cookies, of course!).  We talked about time sheets, dinner schedules,  and this blog… the guys are anxious to get their own page here, to tell their story and decorate it with pictures that they like (HALO and LEGO,  Eagles, Phillies and Flyers, dogs and insects, their favorite music) with the help of their support people.

Liz and Ray (and Adam the Cashmere goat) working on the pasture fence

Support people, they are the reason this whole project is working.  Everyone here is excited.  The room buzzed with conversation as we all planned the farm season coming up this spring.  Ezra and Brent made the first alpaca felt purses and cell phone holders this week, and now we can’t stop thinking about market days coming up! Patrick and JR want to learn to make wooden frames for Ray’s scientific illustrations he is working on,  and they’ll be planting hot peppers to sell… Noel and Jose planned a thank-you box of goodies from the Dollar Store, for volunteers that will come to help out at the farm.

Support people, the backbone of any independent living situation for individuals like the guys here at Juniper Hill.  ‘It takes a village’… and we have one, here on the Hill.  How? Why? We talk about it every meeting, because that is what we need to figure out.  We need to be able to tell other families:  ‘do this, and you will have support people who care, who love coming to spend time with the person they are paid to help, who take initiative, will figure out what is needed and then do it.  Do this, and you’ll have people who will stick it out even when the person they support has a really really difficult day  ‘

Jose, with support person Carin, tries to beat Brent at UNO. Probably won't happen.

Happy support people means happy guys…Here is a list of things we have come up with…..that help keep support people inspired

1. A salary of $15 an hour or more….the guy’s families here work hard to make it happen… and  the support workers can depend on the hours that they are promised.  It’s the bottom line, people have to support themselves. There is nothing more important than this one, no matter how much we talk about other perks of the job.

2.  There is a house/farm schedule to work with, and a weekly plan is laid out.  The guys have agreed to cook once a week for each other, so the support people are becoming cooks as well (it often doesn’t start out this way). The guys want to be paid for doing work around the farm and they need assistance, so the support people have a list of chores to work from. Laundry and cleaning have to be done weekly. Things just have to be done when living on your own. For support people, it’s good to be busy.

3. Several of the guys have made a commitment to volunteer activities in the community that they enjoy, and the support people have to make sure it happens.. and it’s fun!

4. The houses feel like home.  They are comfortable and welcoming. There’s music going, Kit the chihuahua is running around looking for attention, Alice the cat has sneaked inside, it smells like beef stew or chocolate chip cookies.

5. The guys are friends and care about each other.  They like being together and doing chores together. Long ago, our support people learned to care about the guys they were working with, and now they care about the other guys too.  It’s definitely a team effort, and that feels good.

6.  Extra credit: We have really cool animals,  and we grow sunflowers.  Hard to beat that! We are starting a new life all together,  working on creating something meaningful ….and there is much to look forward to!

(This is an added bonus here… we are not saying that you have to have adorable potbellied pigs for your support people to be happy… but it helps!)

And that’s about it.

But where did these people come from?  How do you find them?

Once you have registered with your appropriate Human Services agency (see the Facts and Figures page of this blog for step by step instructions), you will meet with a supports coordinator who will (hopefully) explain clearly your options and the services available. If you are lucky enough to be awarded waiver funding,  you will have a list of provider agencies to pick from. Interview a few!  Make sure that you ask what their salary range is for the various services… especially community integration, personal assistance, and home and community habilitation.  If they pay their employees $9.oo an hour, you are going to have difficulty getting (and keeping) good support people.   Ask your supports coordinator about FISCAL AGENTS, and if they have them in your state.  They are available for some waivers and services in Pennsylvania.

Mindy is teaching Brent how to loom hats, hopefully he will eventually have them as a market item along with his blankets!

The people who work here are from five different agencies. The guys and their families, with the help of their supports coordinators, hired them.  Each guy acts as an individual, and there is no interaction among the different agencies that provide support here. Two of the guys here have traditional ‘provider agencies’ who send support people when they are needed, and the guys work with them to see if they are a good ‘fit’.  In those cases, a few people have come and gone over the past year for one reason or another.

For the other guys here, they are hired by the families themselves, through a fiscal agent …. check out the two that we use here in Chester County PA, it can be a valuable option for some families:

Agency with Choice    http://www.arcofchestercounty.org/awc.html   

Acumen   https://www.acumenfiscalagent.com/index.aspx.     

I’ll go into detail about fiscal agents on another post, it’s important to educate yourself on this one!   Here is link to a comprehensive report explaining how it works: http://www.cmu.cc/docs/pa-guide-to-pds.pdf  (it is a 2008 publication, so some info might be outdated).  Basically, you (or a family member) can become the managing employer of your own supports and hire who you want.  The fiscal agent is the intermediary that actually sends the paycheck.    For the guys here that use them, the support people were found by word-of-mouth, either by the guy’s families or by the people working here already. When you find dependable, responsible people with a good work ethic…. a fiscal agent is a great way to go.

Fiscal agents work really well in a place like Juniper Hill,  a group situation where flexibility is always needed.  Three of the guys use the same fiscal agent, so the support workers (who are all employees of Agency with Choice)  can help out the other guys if needed.  They don’t double up, but they can fill in for that other support person if they are not working with another guy at that time.  It benefits both parties!

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Johnny, our farmer neighbor, keeps us supplied with hay and wood

The meeting went on for more than an hour, and we devoured the chocolate chip cookies, a pot of coffee and almost a quart of milk….and then a knock came on the front door.  Johnny, the wonderful neighbor and farmer next door, had a giant bale of hay for us and needed help getting it into the barn. Everyone scattered immediately… Mindy and Brent got grain to distract the goats, JR directed the tractor through the yard, Jose held the gate open for Johnny, and Patrick herded in the escaped piglets…

Great ending to a meeting!  

Springtime in February walk on the Hill, Feb 1 2012... Andy, Mindy, Noel (who also works with our friend Chelsea and they come for visits), and JR

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.

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…