Category Archives: Funding

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

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Happy New Year! Reflections on three years together

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The snow is falling softly at midnight and outside it is just stunning with the porch light reflecting on the white blanket covering our rolling hills.  Ray is making his way up the hill to his house with his dog, Hahli, who celebrated her first birthday yesterday.  Tomorrow we’ll be snowed in, here on Juniper Hill ….. and Andy and I will cross country ski across the fields, Brent will split lots and lots of wood and keep the fireplace going, and Oh Joy!  it is John’s night to cook and I am hoping for a repeat of the Beef Bourguignon that he made a few weeks ago. And maybe, just maybe… NO staff will be able to get here and it will be just us, all day. 

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Andy has been Special Olympics cross country skiing for years!

Our life sounds so idyllic… and actually, that first paragraph is pretty accurate. We have come a long way in three years!  But lest you think ‘Oh, that could never be my kid’ or… ‘it must be an easy group of guys’…. or… ‘they must have a lot more money than us’ or…. ‘my son just eats ramen, he would never be interested in cooking a meal’…. I’m also going to mention, of course,  the gritty details that go along with our idyllic existence here on the farm.

These days, it’s all about a comfort zone. An anchor.  Home. A safe place that we know, and trust. A place where familiar things happen over and over each day and week and month… with enough repetition so that when new and unexpected things occur, it’s not such a big deal because that comfort zone is there. The familiar people are there, the animals that we know, the same familiar food on the shelves, and that perfect size plate, spoon and glass that you like to use. It’s the comfort of being friends with your staff (even if the agency that sends them insists that you have a professional, not friendly, relationship.  Silly rule, yes.  More on that later). And it’s the comfort of being friends with your housemate’s staff, too.

It’s about routine.

It’s about weekday winter mornings when the fireplace is crackling and staff is arriving and everyone is getting up and ready for the day and the house is buzzing with familiar conversation and we’re talking about the dinner the night before and the leftovers are out for everyone to try.

It’s about that awesome time each weekday ~late-afternoon~ when staff leave and the screens go on …computer, television, IPAD, DS,…and the chips and popcorn fly off of the shelves .

It’s about the absolute best  after-dinner evenings anywhere. Music, The BigDSC_0108 Bang Theory, ice cream, slippers, tea, a cat on your lap and dogs sleeping at your feet.

And it’s especially about Saturday mornings. No staff.  Sleeping late.  Really late.  No responsibilities as long as the animals get fed. Nothing to think about or be reminded of until Monday morning.

It all sounds great… and it is, pretty much.  The comfort of the routine, the relationships, the extended Juniper Hill  family… it trumps the gritty stuff that happens.  It trumps the stuff that doesn’t happen also.

Because it is obvious to me, now, that being an adult with autism is just never easy. 

Not a day goes by for these guys, when they are not feeling discomfort, or frustration, or anxiety about something.

Yes, they are friends and they trust each other.  The familiarity is very comforting at this point. That does not mean, to them,  that the other’s voices are pleasant to listen to.  It does not mean that they  don’t say things to each other that are hurtful.  It does not mean that their taste in music and TV is acceptable to the others. It does not mean that they don’t find each other really annoying, at least sometime during the day. But having friends means compromising, and that can be SO difficult, how do we solve this?

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yes, everyone has their own favorite plate….

The staff are great, they have become part of our family and we love them.  It’s been a year now since the ‘new’ group of staff joined the staff who had been here since the beginning, and things have fallen together and the farm runs fairly smoothly.  But at 930 AM… when everyone is in the kitchen… (including the guys who live in the top house because they want to be eating breakfast where everyone else is)….when five staff have just shown up and are talking and moving around and in your way and bumping into you and going over what has to be done and LAUGHING and TALKING too loudly…  it’s JUST TOO MANY PEOPLE.   The guy’s funding works in a way that does not allow staff to work with more than one person at a time. Everyone needs ‘encouragement’ to get out of bed in the morning, and wants THEIR staff to be there   … how do we solve this?

The ‘system’ is supposedly set up to ‘support’ people with autism that live independently.  To support them in their dreams, their goals, their basic needs. In three years everyone here has come a long way in learning how to cook and make healthy ENOUGH choices, how to be organized and clean ENOUGH, how to be considerate ENOUGH  of others, how to think about finances ENOUGH to be kind of responsible….. but doesn’t this sound pretty much all ‘basic needs’?  What about dreams?  How does a support person make DREAMS happen?  What about love?  What about a life?  What about a bucket list?  It’s REALLY complicated, and REALLY hard to make happen for someone else….. how do we solve this?

How can you focus on dreams, when it takes ALL of your energy just to get through each day?

Basic needs…we’ll keep working on all that stuff as we go along.  And there’s more besides… there’s the continuing saga of the correct medication, or just having a job that you like, that you’ll keep, and that will pay.

The days are full here, and fulfilling.  Our family keeps growing… sometimes things happen and the living situation will change for someone …. so some of the guys have come and gone, and then come again… and gone again….

but always… they remain part of the family… and still remain part of the week’s activities, or the weekend excursions

and so the family grows…. and having this family, well, it makes our lives way more than ENOUGH.

But this coming year, in 2014…. we’re going to think about DREAMS….

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Standing in the way of independence: it isn’t really the money.

funding‘Our son can’t live on his own, he doesn’t have government money for supports’  Our daughter doesn’t get enough in Social Security to be independent’ ‘They’ve cut funding for disabilities’ again, we are on the waiting list, our son is still living at home’  Funding. Funding. Funding.

The autism blogs and parent listservs are filled with information about transition and adulthood and the financial burdens that will come along with the desire to live an independent life.  In this economic climate, government funding is not prepared to support the overwhelming numbers of autistic young people coming of age. The unemployment of people with autism is higher than any other disability. So how will all of these young adults, these inbetweeners’ who could learn to live independently with some supports….ever be able to afford to live on their own, out of their parent’s house?

house_keysIt is a legitimate concern of course, and money will be tight.  But given a certain set of circumstances, it is not impossible to make ends meet.  Supplemental Security Income, or SSI, is almost $700/month and many people with autism will qualify for it. Sharing your home with someone will help to lower your rent. You qualify for SNAP, or food stamps…. around $200 a month if most of your income is from your SSI.  Sometimes your county will step up and award some limited dollars to pay for supports to come in and help a few hours a week. There are jobs out there… maybe not very many that will entirely support an independent life, but jobs that pay enough for some spending money after most of your SSI goes towards bills.

I really don’t think that money and funding are the main impediments to independent housing. They’re just the first consideration……. and just the tip of the iceberg.

What I really wanted to talk about here are all those other things…..

Here is my own personal ‘Top Ten (plus nine)’ list of impediments, after 14 years of helping people with disabilities live on their own.

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Thunderstorms 

Support People who don’t show up

Transportation

Lost Mail

Support People who watch TV, text and read their email and are basically glorified babysitters

Not knowing what to do with leisure time

Junk Food

Too Much Food

Video Games

Support people who take you to the mall but don’t notice that there is no food in the house, a week’s worth of dirty dishes in the sink, and a negative balance in your checking account.

Landlords who don’t fix things

Your relationship with your housemate

Your Parent’s relationship with your Housemate’s parents

Medication..remembering to take them… refusing to take them… or improperly prescribed.

Broken Toilets, Clogged Drains, Lost Keys, Broken Dishwashers, Broken Washing Machines and Dryers

Porn. and mystery charges on the Comcast bill. Hundreds of dollars worth before you thought to put a PIN number in.

Self Control.. (with food and video games and porn)

Loneliness

Thunderstorms, really.

Take thunderstorms.  Alone in a house, your house.  Lightening and thunder happening seconds apart.. that means it’s close.  The power is out and you don’t know when it will come back on. What if it NEVER comes back on?

Or unopened mail.  or confusing mail.  or misplaced mail.  When you are living with supports such as SSI or food stamps, or prescriptions, or an ISP… you get lots of mail and it requires lots of RESPONSES in a timely manner or you will lose those benefits.

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Food.  Eating too much of it.  Eating junk food… only.  It’s all just right there in front of you in the grocery store… and you have $100 in food stamps on your card.

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Support People. Relationships. Medication.  and Porn.  These all deserve their very own blog post….   Better save these for next time.

and with all of these things to worry about, do I really believe this can be done?

ABSOLUTELY!

Waiting for Hurricane Sandy

Waiting for Hurricane Sandy

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?

Jose’s Life Worth Living…the success story of a new kidney, and new life

Next month we celebrate six years of Jose’s new life, given to him with a kidney transplant on September 20th 2006, his 18th birthday.

You might have seen the national headlines this week, about a young man here in Pennsylvania being denied a heart transplant because of his autism… yes, it actually states ‘autism’ as a reason in the doctor’s report.

Here is the link to the story:

Autistic man denied heart transplant

We are thinking about this a lot here on Juniper Hill, and this is why.  Our wonderful friend, Jose, was given a kidney transplant six years ago, and now he has a  a rich, fulfilling life.  A life filled with friends, family, adventure, new experiences, a happy home, and so much more to look forward to, now that he has been given this second chance.

Jose also has an intellectual disability.

Jose is not on the autism spectrum, but his best friends and housemates here on the Hill, all are. And Jose would like everyone to know that his life is important and worth living, and if his autistic friends were in similar circumstances, they all would deserve a transplant as well.

Jose was not what a doctor would consider a ‘good candidate’ for a transplant, given the usual requirements. He had all of the same issues that Paul Corby has, the ones listed as reasons for denial.  Psychiatric issues, a disability, and an environment that did not appear to be able to handle the complexity of his life-long after-care. He was taking medications to help him deal with the stress of dialysis and not knowing if he would ever get a new kidney…. his immigrant family struggled financially, did not speak English, and did not understand the instructions that came with his medications.  But for some reason…. after years of dialysis at AI DuPont Childrens Hospital in Wilmington, Delaware, he received a life-saving kidney.

Jose struggled for some time after his transplant.  His home environment was not ideal for his recuperation, he gained unhealthy weight because of his medications, and he was sick quite often.

He moved to Juniper Hill in the Fall of 2010, and his first winter was filled with bouts of nausea and indigestion, migraines, and flu symptoms.  His new support workers, funded by his government disability  ‘waiver’ that paid for people to come to his home and help him with medical and daily living needs…. kept up with doctor visits while teaching him how to cook, keep house, and get along with housemates.

Jose combing Cashmere off of Johnny the goat

Today, two years later…. Jose has lost all of his extra weight, no longer takes psych meds and has reduced his medications to basically just those that help with the kidney transplant.  He is strong and healthy and ready to take on the world.  It is inspiring just to be part of his life.

Jose received the ‘Against all Odds’ self-determination award at the annual luncheon this year

He volunteers at the local community center for after school children, mostly Hispanic, at The Garage in West Grove, PA. He is active in his church community and has made many friends.  He is passionate about singing… and his life long dream is to become a Christian singer. He is talking about moving to a nearby city in the ‘not too distant’ future… and getting his own apartment because he loves the hustle and bustle of city life.

Now that he has his health back, he goes out on weekends, by himself (without  his support workers) in his old neighborhood of Kennett Square PA and knocks on doors of businesses asking for work. He wants to work with young children and especially loves to be in hospitals making children laugh.

And home on the farm? …  he takes care of the farm animals in the morning, prepares his own meals, does his laundry, is an all around responsible young adult, considerate housemate and loyal friend.  He cooks lunch for a crowd of 15 volunteers every Wednesday with his wonderful support worker Carin.  And for breakfast, he makes a mean pot of homemade oatmeal.

He makes everyone laugh, every day.

Well lived, Jose.

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.