Tag Archives: housing

Who’s in Charge?

It seems like a simple question.  When a group of young adult guys with autism are living independently but require additional daily supports ……  who is in charge?   

It definitely is not such a simple question.

Everyone involved has a say, but who makes the final decisions?  The parents.  The support staff.  The support staff’s agency.  The bossy big sister roommate (that would be me).  The landlord (uh, that’s me too). Society. The guys?

Everyone wants to be in charge of his/her own life.  Everyone has that right. OK great.  Let’s say we try that.

Let’s stay up until 430AM playing this video game and then sleep all day.  Oh wait, it’s 9AM and my support person is here.  I don’t feel like doing anything, could you just go home?  What, you depend on the money, this is your job?  Yeah but I’m YOUR BOSS and I say go home.

You want to help me find a job?  I don’t want a job. I get enough money from social security and food stamps to pay rent and eat.

No, I haven’t showered.  No, I haven’t done the dishes.  No, I haven’t cleaned the bathroom.  Yes, I guess the garbage is overflowing.

no… this is not a real picture from the house

I don’t feel like cleaning up, you are my staff so please take me to the mall.

I’ll  just eat ramen, chicken flavored only.  And popcorn.  And drink Dr Pepper.  Yeah, I gained 75 pounds this year.

I feel terrible.  I’m going back to bed.

Hmmm… this definitely is not going to fly with the parents.  Be back home with Mom in no time.

OK …let’s try the parents.  ‘You have to go to bed by ten, are you brushing your teeth? wear that green shirt with those jeans, throw that old sweatshirt away, make your bed, stop playing with those toys you’re an adult now, you don’t need dessert every night, and here, use this new quilt on your bed it matches the furniture better.’  ‘Oh, and I am calling your support staff to tell them that they have to teach you to cook  chicken cordon bleu.’

…What ABOUT the support staff? (or the ‘bossy big sister’ housemate?)… ‘You have to go to bed by ten,  brush your teeth, wear that green shirt with those jeans, throw that old sweatshirt away, make your bed, stop playing with those toys you’re an adult now, you don’t need dessert every night,  and you have to learn to cook  chicken cordon bleu.’

ugh,  you  sound just like my mother….

Wait, I thought I was going to live independently?

Maybe it should go something like this……

‘My parents spent a lot of time and money helping me to get set up in my own home, I should make an effort to be responsible and considerate.  I’ll put some time in every day to learn how to take care of my home, but then I’d like my support person to take me to the mall. I hired my support staff, so it is my responsibility to be available (and awake) during the hours they are scheduled.  But on Friday  nights, I am going to stay up most of the night playing video games, and I just might sleep all day on Saturdays.’

‘I hate taking showers because I don’t like to be wet. But nobody wants to be near me when I stink ,and I do want friends.  I live in a house with other people, it’s not fair to make them put up with a smelly house.  But I refuse to shower every day, three times a week is enough’.

‘I am NOT making my bed, I’m keeping the old sweatshirt, and I am having dessert every night … but only after I eat a real dinner, because I do feel better when I eat real food. Sometimes I am going to eat dessert first. And there is no way I am using that ugly quilt from my mother’.

It’s all about compromise.  And when the rewards are an independent life and new friends, it feels worth it in a very short time (give it a year, that’s not so long).

Mom, however, may never get over the quilt thing.

As for the landlord, she gets to insist that the garbage gets removed. She cannot tell you what time to go to bed.

this isn’t a real photo from the house either. We only have one trash can… but sometimes, that one trash can looks like this

And society? the rules say that you have to drive on the right side of the road in the U.S., and you cannot walk down the street in your underwear.  You don’t get to change that just because you have autism.

and these are the things that we talk about during dinnertime around here….

Just for the record…..  It took a year or so, but here at Juniper Hill we are resigned to the fact that we just can’t stay up all night and still function with our staff the next day, so we make an effort to get some sleep.  We like the attention we get now that we’ve lost some weight because of a better diet.  And we’ll shower a few times a week just so the ‘bossy big sister’ will let us in her van to go grocery shopping.

‘More Rules than Jesus’ (today’s Juniper Hills quote of the day)  …Last night we were talking about the new ‘house rule’ that the TV, computer and video games have to be off during the week when it is before 2PM, (which is the time when the support staff all leave), to be considerate of others who are working around the house.  So Jose, one of our devout Christians, says…’ I wish I lived with Jesus, he doesn’t have so many rules’.

Hmmmmm…Not sure if the Pope would agree!

and guess what?  it was ANDY’s idea to learn how to make chicken cordon bleu (‘you know’, he says, ‘that chicken with the cheese and ham rolled up inside’) and he picked up the phone and called his mom for the recipe. IT WAS AWESOME.

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Autism Acceptance… begins at home, here.

Six guys with annoying habits and quirky interests.  Six guys who have difficulty accepting other people’s annoying habits and quirky interests. But these guys love each other, they really do. They miss each  other.  They help each other.  They forgive each other.  They are good friends, loyal friends.  They ACCEPT each other……

Their musical tastes range from death metal to christian rock, 70’s music to broadway musicals. Someone gets up at 630AM and bangs around in the shower next to another’s bedroom who went to bed at 2AM.  One makes loud sudden sharp whooping noises when it is least expected, causing others to drop to the floor in shock, hands covering their ears.   One collects Barbie dolls and designs clothes for them.  One has Tourettes and swears often.  The Christian guys hate swearing and dislike any behavior that has a hint of femininity. Another melts down loudly at the word ‘WAIT‘, which is inadvertently repeated by everyone else, several times every day.  Two are very religious, another is an atheist and recites the historical significance of every religious event that refutes Christianity.  They are determined to convert each other, and very sure that they are right and the other is wrong. A deep monotone baritone that drones.. on and on and on about scientific facts in great detail is ever-present.  Often, impulse control is non-existent and they steal from each other.  Accommodating food sensitivities always makes someone else unhappy. Everyone believes in a right way and a wrong way for everything. But no one agrees on what that is. Television preferences include Anime cartoons, Sci-fi, History, Discovery, old Abbott and Costello, chick flicks with Brad Pitt or Tom Cruise, Mr Bean, and the Weather Channel.  No one agrees on what to watch.  Oh, wait a minute, except Mr. Bean.  They all agree.  Everyone thinks Mr. Bean rocks.

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!

Bossy Big Sister Live-in Companion

Being the live-in companion to a bunch of guys young enough to be my sons, I had to make a concerted effort to not be the ‘mom’ of the house.  We came up with the ‘bossy big sister’ role instead.

It can be a difficult role to navigate, the live-in person to a bunch of guys who are old enough to live independently, want to make all of their own decisions as young adults, but who are still in need of support in order to succeed.  So I tried to imagine them as younger somewhat annoying brothers who leave their trash around the house, hog the TV, inhale all the good junk food, and who don’t really care if their socks smell or if they have gone four days with out a shower.  Once I got that picture in my head, our relationships fell into place. ‘Self-determination’ is a tricky balance of minding my own business and declaring my right to an odor-free living environment. I have now had a year of practice not saying the first nagging thing that comes to mind as I enter the kitchen and everyone’s dishes are in the sink…with food on them. I can’t ‘demand’..but boy can I whine!

I spent many years in a university setting getting various college degrees.  During this time, I lived with other students in big houses with lots of bedrooms.  Everyone has their own pet peeves in these types of living situations, I was the ‘kitchen police’.  I love to cook…. and I clean up as I go when I am preparing a meal.  I never had a lot of tolerance for housemates who trashed the kitchen, and I still don’t.  So when the guys leave food out, or they don’t throw away trash or wipe counters… I whine until they do. I am still learning to NOT sound like their mothers.

I also am the one to call a house meeting to talk about dinner schedules, household chores, or group trips coming up.  But it is the rest of them that bring up their own pet peeves, and that’s great.  They reprimand each other when the music is too loud…. or if someone takes a giant serving of lasagna or eats too many Clementines.  Trouble is, they sound like each other’s mother when they do it too! Still working on that one.

By the way, these 6 guys are absolutely the best housemates ever.  I have never laughed so hard in my life, or had so many inspiring things happen every day.   Somewhere around mid-summer last year, I began to realize that I was not here doing them a favor anymore, I was not just doing this for ‘other families’ to replicate. How lucky am I… to have not one, but six amazingly loyal, caring , interesting, hard-working and brilliantly funny best friends sharing a home.  Definitely worth a few smelly socks on the bathroom floor.

(coming soon:  how to find and keep a live-in companion for your family member!)  

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…