Tag Archives: staff

From housing model to home: five years later.

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Through the grove beside the pasture, a well-worn path now leads down the hill to Home

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and another worn footpath, now the shortcut to Ray, Pete and Brent’s house


In the summer of 2010, we painted the newly rehabbed 4 bedroom house a
forest green. We fenced two acres of pasture and moved in two alpacas, five cashmere goats and a bunch of chickens. Over the next 10 months we got to know eight (yes 8!) pretty cool guys and their families. 

Five years later, and these same eight guys are still around.  There are five guys living here at a time now, here on the Hill.. in two different houses.  All eight of the guys have spent time living with each other here.  Some have left… and returned, left again… or moved to their own apartments, or gone home with family for health reasons. But still… on Wednesdays and birthdays, most of the original 8 guys are together. Celebrating milestones together, working together (well, a little!), going on trips together, hanging out on market day in the Juniper Hill booth together, talking together, eating together, just being good friends… together.

June 2015 Celebrating Patrick's one year anniversary in his own apartment!

June 2015 Celebrating Patrick’s one year anniversary living in his own apartment!

The ease of their interactions is obvious… how sensitive they are to each other’s moods, and how much they care if someone is not having a good day. The support they give to each other, the shared humor, shared food, and shared history.  The brotherly bickering and how quickly it gets resolved. The level of confident independence at which they move through their day … with each other for company and support.

Five years ago, we began as a Housing Model.  We are a family now, and Juniper Hill Farms is a Home. It’s different, and it comes with complications.

For the last five years, the slide below has been the final point made in the Juniper Hill Farms presentations that I’ve done for family groups, housing, or autism organizations.

‘Our goal is to help other families feel capable of creating a living situation like this for their family member’

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Seriously, ‘Our‘ goal?  Wait, let me check with the guys.  Hmmm I don’t think so.

It was, and still is one of MY goals. Learning from these guys about life? It’s still exciting every single day.  I laugh, I get frustrated, I philosophize, I have fun.  Every experience with them shapes the story of how to create a life of ‘inter’dependence and happiness for an adult with autism… a story that will hopefully encourage other families to give it a try. In five years, the learning curve has not leveled off, not in the least. It continues to show the increasing complexity of an independent life with autism, and how rich that life can be for them as well as for everyone around them who is lucky enough to be along for the ride.

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Celebrating Michael’s birthday (really Ray is having fun!)

The guys, however? They now have other interests. And priorities.They really just want to get on with their lives.

We had so many visitors that first year.  We had an open bedroom so that we could welcome interested guys who were looking for more independence and who wanted to see what that felt like for a week or two, or a month or two. Its scary to just make a move… much easier to just test the waters. So just come to Juniper Hill to try it out!  It was a really good idea, at the time.

We also had families and groups of people from related fields visiting to see what we were doing.  The guys were used to strangers coming in and out.

and actually … well, they were strangers as well!

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Check out this year’s new variety… Greenburst!

Brand new to the living situation, we all did the best we could. There were not a lot of established routines that first year… everything was a trial run and we worked out kinks every day.  We learned how to take care of animals and we tried to grow sunflowers. We had dinner together every night, went on fun trips together, argued and worked things out. We became friends with the staff, and with each other. Semi-organized chaos, that first year or two.

Then slowly, things began to change.

First the comfort level, then the trust, began to build.  That’s when everyone started to get their own ideas about things.  They started talking to each other, instead of just to the staff and me.  They made their own plans.

Fast forward five years. It’s now September, 2015!

IMG_4048These days, what we have on ‘the Hill’ is  community.  And we have a home, and a family. It is not that different from most other people’s homes. Everyone here has a life that involves getting out into the wider community every day.. where they work, volunteer, exercise, shop and eat.  Just like most people.  They come home each day and sit around the dinner table and shoot the sh*t. They grab a bowl of ice cream, their IPad, or ‘their’ seat in front of the TV and watch movies.  Or documentaries.  Or animated funny stuff with raunchy jokes. On weekends they sleep late…. hang out with the animals… take care of their home…walk to the creek. Just like most people.

So… what’s the problem?

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yes.. this is the staff schedule in the house.

Try to imagine people showing up in your kitchen at 9 in the morning. Every. Single. Day. 9AM. When you just want to grab a glass of orange juice in your Hello Kitty pajama sweat pants and go back to bed and read a book  (hey, there is more than just one of us with Hello Kitty pajamas..) We love the staff.  Just not always at 9AM.

And how about MEETINGS??  Looking forward to coming home from work in mid-afternoon and taking a nap on the couch?  There are five people who are a part of your housemate’s ‘team’ sitting on it already. YOUR couch, not theirs.

and WEDNESDAYS!!  When our best friends come over,  and our former housemates.  and each person’s staff.  and people doing community service.  and volunteers. and everyone is trying to talk at once and the house is not big enough and people are trying to cook lunch and staff are catching up with each other and both bathrooms are OCCUPIED at the same time and no one really feels like ‘volunteering’ anymore because they just want to hang out. and EAT. No wonder it’s sometimes the day of meltdowns and hiding in bedrooms. But.. we LOVE Wednesdays too. Wednesdays are how we BECAME this community. (and we do get some sunflowers planted…. and watered…).

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Meet Ethan! He came to visit the farm with his parents this summer, and stayed to try it out for a few months. He is now well known as ‘the chicken guy’ at the market. And he is going to settle in with us for the winter, at least!

Families call regularly and ask to visit the farm. There are so many young people on the spectrum who are coming of age and want to have a life independent from their parents.  There are also so many aging parents who wonder what plans to make for their adult child. Farm life sounds good to many of them, and most people want to see it for themselves.

So we are planning better now.  Most meetings can happen at Starbucks (better coffee too), or the supports coordinator’s office, or outside on the picnic table.  (Anyplace but the couch.  Or the kitchen table!)

and visitors.. feel free to come on Wednesdays… we will feed you! and occasionally during the week we will sneak you in when it’s quiet.  Just don’t come on the weekends, that’s pajamas time.

IMG_5363We look ‘bigger’ on the internet… on this blog, our Facebook page, our YouTube and Instagram.  We look ‘bigger’ in pictures.. pictures of sunflowers, and pictures of great food, pictures of our booth at the weekly farmers market, and group photos with our animals and friends.

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5 years later, and the furniture is looking well used. This is where Andy’s heel sits.

Really… we are just a home.  Not so different from yours. It gets kind of confusing  to entertain so much of the time.

and…well…. we don’t always want to dust. That’s all.

See you on…… Wednesdays!

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Yesterday, this black swallowtail butterfly emerged from its cocoon. We have been watching it all week! It seemed like a good metaphor for this post.

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We need to talk about staff. Be careful what you wish for!

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BINGO! Brent won a divided dinner plate… (his preferred way to set up his meals)

It was a great day last Wednesday, our weekly get-together with friends day.  It was a Hang Out Winter Wednesday (‘hang out’… because we are definitely NOT getting any work done these days !) and we played Bingo with our friends.  New prizes from the Dollar Store made it a hopping competitive afternoon, and everyone had fun. Almost.

We’ve been together here for awhile now, this Wednesday crowd….our extended Juniper Hill family.  Sometimes it feels that here at the farm, we can be happy in our little group and… for a little while …. we can ignore the politics going on outside of our boundaries, the discussions that ultimately affect all of our lives with policies that dictate what the ‘best life’ for a person with a disability should be.

There are two stories told below.  Two very different, and very real scenarios.  Both can be acceptable in the adult system that provides services to you or your adult child with autism. Make sure that you truly understand the ‘vision’ of the agency that you choose, and how they carry out their mission.

Be careful what you wish for.

Our Bingo afternoon began a bit rough..  Very rough actually.  And very sad and upsetting for all of us.  Our friend Debbie (I’ve changed the name for privacy’s sake) arrived with a new staff person, and she was visibly upset from the first minute. ‘I miss Anna’ (former staff person whose name was also changed here).  ‘She isn’t working with me anymore’. Why can’t I talk to her?’.  I MISS Anna!’.  I NEED to hear her voice!’  Why won’t they let me see her?!’ and screaming ‘GET AWAY FROM ME!’ to the new staff person…. and screaming ‘I hate %&*@!#$!! (the name of her provider agency ).  It escalated to the point where Debbie threw herself on my bed sobbing, calling out Anna’s name.  I held her in my arms and she squeezed me until she calmed down. She eventually joined the Bingo game and seemed to enjoy it, though she was quiet for the most part.  She left early.

What happened?  It seems that Anna, the beloved staff person, broke a rule. She was suspended, probably fired. She is now forbidden to have any contact with Debbie, with whom she has been working closely for months.

And the rule?  Your personal life MUST be kept separate from your work. This means that the person with autism must not meet your family, visit your home, or be involved in your life in any way.  There must never be contact with the ‘client’ while not at work. (ugh.. how I abhor the term ‘client’…)

And the rule-breaking event?

We have had quite a winter here in the northeastern U.S.  Back to back snowstorms with power outages lasting days in some instances.  Power outages, with autistic people.  Families have been scrambling to make it as easy as possible for their family member…. taking precautions, buying generators, leaving town.  Debbie’s area of the county was hit hard, and their power was lost for days.  Debbie can NOT handle power outages.  Anna lives nearby and had power, and she volunteered to walk over and get Debbie and bring her to her house until power was restored. Debbie felt safe with Anna.

The program found out that Debbie had been to Anna’s house, and Anna was suspended.

The other rules of this program?  Do not form a personal relationship with your client, be professional at all times.  Do not touch their money, or their meds or personal belongings. (Debbie’s family bought a power generator and could not get it to their house in their car, so Anna helped them by putting it in hers… Anna was also cited for that).  Do not eat their food. No photographs.  Do not ever transport another person while you are transporting your client.

This is the way that this program keeps their ‘clients’ ‘safe’.

and then there is this rule:  ‘Do not do anything for them.  You are not there to do their work for them. They must do it themselves. If they don’t want to do it, they don’t have to’.  I guess this means that they already have to know how to do something before you try to teach them how to do it. (Whatever happened to ‘modeling’ a skill as a step in teaching someone?) Unfortunately, what this approach often translates to is an excuse for the staff to ignore the bathroom.

This is the way that this program ‘promotes independence’ in the name of ‘self-determination’.

**just as an aside here… it is true that everyone should be able to ‘self-determine’ NOT to clean their bathroom.  Unfortunately, a lot of these guys that are supported by these agencies do not fully understand the consequences of a decision like this.  This is not fair to them.  It is absolutely necessary that ‘understanding consequences of your decisions’  HAS to be part of the support that is provided.  It rarely is. The consequences of not cleaning your bathroom when you are an adult are that your housemates will be mad at you.  They will have to do your part of the work in keeping up the house and their staff will have to take time out of the regular routine to help them.  This makes the staff frustrated that the work is being dumped on them. In a rental situation, the landlord will not want tenants that do not take care of their place.  Self-determining to not clean your bathroom puts you in jeopardy of eventually losing your friends, having your friends lose their staff, losing your housing because your housemates don’t want to live with you or because the landlord no longer wants to rent to you, and ultimately affects the way landlords view renting to people with disabilities… .  This is an entire blog post in itself.**

Here is another story.  This one is happier.

Pete is here visiting us at the farm for a week.  He is a good friend who has known us all for three years.  He knows the staff people of the other guys here as well, and he receives support services from the same agency as Ray, who lives here. This morning, Pete had no scheduled staff while all of the Juniper Hill guys did.  Ray asked his staff if Pete could come with them to his volunteer job at Comp-Animals, the animal rescue organization where Ray walks dogs and does some cleaning a couple of times each week.  Pete went along… in the same car…. with Ray and his staff.

Ray's smoked salmon in a puff pastry crust' and Pete's Old Bay Shrimp and Scallop pie

Ray’s ‘Smoked Salmon in a Puff Pastry Crust’ and Pete’s ‘Old Bay Shrimp and Scallop Pie’

It was really nice for Pete to be able to tag along with Ray this morning. They also cooked a meal together this week with Ray’s staff, they made an awesome couple of seafood pies.

But it was tonight’s events that really made us realize the importance of having an unwritten policy of friendship and  ‘inclusion’ with your staff members.

Ray spent the afternoon today with his staff in the town where he used to live independently, 45 minutes from the farm.  He went to the library, his favorite one, and checked out some books and videos.   He cruised his favorite stores, visited a friend. When it was time to go, his staff person brought him to the bus station where for two years Ray has waited by himself and taken the bus back each week to our neck of the woods.

Today, for some reason, Ray got on the wrong bus.  He does not/will not carry a cell phone. He did not panic (maybe just a little!).  He realized he was on the wrong bus, got off several stops down the line, and found another bus to take him in the direction back towards the bus station.  Ray then walked for 45 minutes looking for his staff’s apartment, and found it.  He had seen where it was only once, months ago.  Somehow, he found it.  She fed him dinner and drove him back to the Hill at 7 o’clock at night.  Of course she did!

Wow, count the rules that would have been broken today if it had been this other program.  Boundaries.  Personal life.  Being at the staff’s home, with her child. Riding in the car with another person to the animal rescue.  Sharing food. Assisting during off hours.

And if Ray had been supported by this other agency, with all of its rules, he most definitely WOULD have panicked tonight.  Because he would not have had the supportive, caring, inclusive community that he has now, after three years living here at the Hill. He has personal relationships with ALL of us.  All of the staff, all of the guys, all of the guy’s families… some of the staff’s families.  He has all of our phone numbers (which he would have used if he had not found her house).  He has been to some of the staff’s houses…. including the other guy’s staff. He is skilled, self-confident, self-determining and independent, and he feels safe.

This agency would, in its defense, say that if Ray had been one of their ‘clients’ and somehow contacted their emergency hotline (staffed by unknown people) by asking someone on the street or going into a business and being confident enough to ask to use a phone (not sure how this fits with their ‘safety’ policy)…  they would have sent a taxi to take him home.

Setting up supports for yourself or your adult child?

Who are YOU gonna call?

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Banner photo at the top is of a few of the Wednesday gang with Alison’s (Andy’s staff) puppies