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.
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?
Banner photo at the top is of a few of the Wednesday gang with Alison’s (Andy’s staff) puppies
A very powerful illustration of different policies and approaches to adult provision through individual stories. Real stories like this are the best way to make concrete the philosophical implications of the choices we make. Thank you!
Thanks Liz, I agree! Real life is so much more complex than a set of written rules implies.
and – I meant to say – best thoughts to ‘Debbie’ and ‘Anna’…
I will tell them you are thinking of them!
Amazing information thank you for sharing
Maureen McCarry Mom of Kevin age 29
Sent from my iPhone
I’ve always said theory and practice are two very different animals. While, on paper, rules and regulations may make sense, they are not always practical. Not every rule works for every person. It’s a shame that agency is so regimented in providing for its “clients”. Thankfully, “Anna” understands that she is working with people, not clients, and her kindness and compassion shone through. Hopefully another agency will hire her, and she’ll continue to do the work at which she excels. Wishing Anna and Debbie all the best!
Yes, ‘Anna’ does excel, Kathy! She is the type of person that everyone wants to have working with them, or their adult child. Kindness, compassion, and a boatload of common sense. And she WILL continue to do this type of work! These comments here on the blog are a big help to her, I’m sure.
Our daughter has been in similar situations. Why can’t the service providers just do the right thing. Some people let data collection and so-called rules really get in the way of actually providing what my daughter needs. We are fortunate that we have 2 service providers helping our daughter. And luckily one is more like your second story.
Person-directed or self-directed service is what we are planning for. Maybe that is the ultimate solution although this service is not covered under the adult autism waiver, I believe.
I agree Jim…the guys here who have self-directed support services (where you hire and train your own staff) have been the most successful in every way. The autism programs here in PA do not cover this type of support, yet. Something to work towards!
Ray’s response to all of this, after seeing Wicked on Broadway this week… that this agency with it’s rules has a ‘Tin Man’ policy, only hiring people who have no hearts.
Today, I will begin my long, long book, that I have put off for 35 years.
Send me the first chapter, and we’ll post it here! The responses from people who do not know this ‘system’ have shown me that it’s a good thing for folks to know….
I’m 24 and have Asperger Syndrome, and I know how hard it can be for someone with Autism to handle a power outage (even for a few minutes). My hometown was struck by a devastating ice storm in early spring of 2003. I was about 9, because I was born in June of 1993. Now, I have grown up my whole life in Upstate New York, so I’m no stranger to winter weather in early spring, but this was unusual even for the area where I grew up. Many homes and businesses in the area were without power for days. My family went almost a week (I think about 5 or 6 days) without power in our home. I was terrified of storms and bad weather for at least a few years after that (and for a while I was even afraid of a small rainshower), because I was afraid we were going to lose power again. We had lost power in our home several times before that, but we usually got it back on after a few minutes to several hours.