Transcript George Braddock

MR BRADDOCK:  Good morning, real pleasure to have this opportunity to come to Ireland and give this talk, just by way of introduction, I come to this work on a little bit of a different path than a lot of the other speakers that you've heard today.

I'm a general contractor, a carpenter, I started into the trade in 1980 and in 1984 I did my first job for people with developmental disability, in Oregon they passed a law that said that people living in nursing homes with physical disability that weren't age appropriate to be living in those nursing homes had to move out and move into community based housing, so they passed laws that allowed five unrelated adults to live anywhere in the State of Oregon and you couldn't add special provisions or special requirements or laws for them to be able to do that.

So just like I would if I was going to build a house for you or work on remodelling a house for you, I went to meet the five people that lived in the nursing home in Florence, Oregon, what you had were young people living with 65, 70, 75 and 80 year old people, why?  Because the physical environment made it possible for them to participate in the activities of daily living.  They had services and supports they needed.

Tracey lived there and Danny, and Caroline and I began to realise quickly that each one of those individuals, although all with a label of mobility disability, they were all very different.

Patty, her chair was almost five feet long, she spent most of her life almost completely supine, Danny was young, had a speedy chair and got around well.  Tracey drove around in a big powered chair varied for shortened legs, so what was the bathroom that was going to work for every one of those folks?  What was the house, the layout of the house, what were the configurations that was Universal Design for everyone coming out of that nursing home into community based housing?

I realised person centred planning was really important.  You really did have to think about the circumstances of those individuals and then accommodate them in their environment.  I have to say one of the things that I have been really impressed with in the time I have been invited to the conference is what Ireland has done with Universal Design.

You are really way ahead of the game in terms of how that is being employed, very thoughtful, not only are you looking at making a great base, the kind of things they talk about are the most important things in environments, good light, good air, ability for people to move around, and then add to that the idea that the house is changeable, as you change.

So as you age, which you are all going to do, my friend Emory tells me I'm only temporarily able bodied, that's true, if we live long enough sooner or later we all face those issues, so to have a base like that would have made my project and work much more easily accomplished.

So the trajectory of today's meeting is interesting from the large public policy perspective to what that ends up being in terms of implementation in a city like New York.

But the real heart of this thing is really the voice of people with disabilities, and for too long we haven't really listened to their voice.  We've gone to experts, people that knew what they wanted, knew what they needed in their lives.  And more and more you are beginning to hear that voice and that voice is getting louder.

It's important that the voice of self advocates really be at the front‑end, because it is really those individuals and advocates that then can begin to influence public policy and you have to bring your politicians, you have to bring the body politic along if you're going to change the laws.

Really in many ways it's about changing the laws, to make it possible for people to have opportunity to live in community.

My show today is going to be talking about working with individual homes, and making homes that work.

So this is actually my stepson, Colin, Colin is 36 years of age, Colin experiences autism at a very significant level.  He is profoundly intellectually disabled and these are his two roommates, Connie and Jenny.

I want to point out most people with developmental disabilities actually don't have physical disabilities, there's less than a third of the people with that diagnosis have physical disabilities, yet most of our thinking really evolves around issues of accessibility, wheelchairs and so forth, so remembering that intellectual disability, cognitive disability, sensory processing issues are much more the commonality in relationship to people with disability.

These three individuals live together and stories are important.  Colin as I said experiences autism at a high level, so for a long time the houses that they moved Colin into were houses that were occupied by other individuals with autism.  I have always tried to understand what it was about the diagnosis of autism that made people with autism want to live together.

That's really not the case, it's convenient in many ways, sometimes people think that it's actually economic and cost effective, because then the kinds of expert services that need to be delivered can be done more efficiently if all the people that live together have the same label.

And Jenny, Jenny is nearly blind and she lived in a larger group home and always wanted to have a space that was more her own.  Tanya lived completely independently in the community, in her own apartment for many years, over time her physical condition deteriorated and she needed more assistance.  These three people chose to live together.

And that's a really important thing, that idea of choice.  Because what is it about having a developmental disability that means that your rights have been taken away from you?  That I can assign you for a place to live?  That I can take that kind of control of your life?

And it really, there's nothing about a developmental disability that you take away your rights as a citizen.

There are four key principles that I use to guide my work.  At the end of the day what you really want is you want a house that works for you.  A house that makes sense for you.  A house that has the things that you need.  A house that allows you to control your life, as much as you can.  A house that will let you enjoy and participate in the things that you want to enjoy and participate in.

You want a place that's sustainable, you want a place that is welcoming and that you can have friends come and visit you.  These four principles can be used in our work to evaluate, not only the assessment of the project, but also the particulars as we move forward.

This is my friend Emory, I mentioned Emory a couple of times.  Emory is a long distance bicycle rider, instructor in improve dance, lives in his own home with his own staff and has cerebral palsy.  We have travelled quite a bit and co‑presented on a number of occasions.  In this picture Emory just got done using the toilet, he is 44 years of age, every single time that he used the toilet somebody had to wipe him, he once told me when we were travelling together, to remember that when I wipe him he knows what kind of a day I'm having!

Sometimes something that we forget is what is the business end of care feel like?  What's it feel like when people are taking care of us and how we have to be careful about not offending them or making them mad, because we're really very vulnerable.  This is Emory's own home.  When I travel with him, he is really disabled, he can't do anything with his hands, I have to do everything with him.  You go to the accessible hotel room and the shower sheet is this big, but in his own home he can get around and do all those things himself.

So in his bathroom he can transfer through his toilet, then there's a toilet seat fitted, made by a company called Todo, it's a Bidet, it hooks into plumbing, you have to have a receptacle and then because he can't do anything with his hands, we set up a controller on the floor, he can push a button, it's warm water wash and air dry.

Not only is it just the mechanics of changing that situation, but it's about how appropriate technology can deliver independence, but also deliver dignity.

What we have found over time is that a person centred home that meets the needs of the individual, not only does it empower the person in their own life in the way that I have been talking, but also reduces the stress and workload on the people that care for them.  And that's a really important point to make.

Most of the work that I do now is working with families, it's still working with families.  Most people with developmental disabilities, well over 75% are still living with their families.  And the families are providing that direct care.  And if you can look at the situation, what are the stressors in that family and help reduce the stressors, help support that family, you can help take the work off the person that's providing the care, that situation completely shifts for the better.

There's a couple of interesting points in this slide that I want to speak to.  Colin is a person that really wants to know what's going on all the time.  And it doesn't mean that he necessarily wants to participate in what's going on all the time.  He just wants to know about it.

So there's something magical about aquariums and Colin is convinced he can see you through the aquarium and you cannot see him.  And we've actually made use of that concept on a number of occasions where there's a transparency, it's about me being able to pay attention, being connected, but also Colin being able to be connected without feeling the social pressure or force.

Sometimes it's the idea that it's really about giving a person a place to stop.  So Colin will get upset, sometimes he makes himself very big and will stomp around.  We put up this little divider in the house, and that door slides out, so when Colin is not upset he can just step over the top of that door, if he had his morning cereal and puts his dishes away he can step over, when he's upset and that door gets closed, it might as well be 10 feet tall, it gives Colin that edge condition and the place to stop.  So it's about how the environment can respond to helping support people that are dealing with anxiety, deal with frustrations, it really gives them an anchor to get the control back.

One of the people that I talked about when I first started the conversation was Tracey.  Tracey lived in a nursing home in Florence, when I first met her she said she wanted two things, she wanted her own apartment and she wanted a dog.  I said I was there to offer her a place in a five‑person residential group home, and she couldn't have a pet.  She said that was all right because she was determined and sooner or later she would get what she wanted.  She left Florence and moved into Sandy Street and went on the waiting list for the accessible apartment in Southtown.  Five years for her number to come up, talk about the 90,000 people waiting on the wait list.

Five years she waited, finally the accessible apartment came up, I'll never forget the day I picked her up in Sandy Street, got to pick her up in the van, there was the leaver lock, low threshold, light receptacles were lower, closet rod was lower in the bedroom, doors were three‑foot wide, went into the bathroom and the high‑rise toilet and wall mounted sink and there it was, it was the ADA approved accessible apartment.

ADA stands for Americans with Disability Act, a law that says that people with disabilities have a right to certain physical properties in their home.  Well Tracey had a lot of capacity, and she did, she had this chair for the shortened legs, she had dexterity, she was smart, she could scoot.  But every day twice a day someone would come to Tracey's apartment and help her with her toilet, so this was an hour and 15 minutes in the morning and an hour and 15 minutes at night.

We came up with a plan working with Tracey, we said we could develop a platform, which was counter‑weighted, folded down, she could transfer to the platform, use the toilet, transfer to the tub, had a shower seat mounted at the bottom of the tub, lift up and she could take a bath by herself.

We went to the state and asked for funds to do that, they said no.  We said wait a minute, you're sending somebody an hour and a half every day to help Tracey with her toilet and you won't pay so she can do it herself.  They said no they didn't have funds for that.

It's the way the social movement works, in many ways if there's a problem we went to send in the troops, occupational therapists, physical therapists, rather than thinking about how the environment can be shifted so people can do things for themselves.

We couldn't know how people feel about the world unless you take time to ask them.  Sometimes they don't communicate in the same way that makes it easy for us to understand.  Not everybody's going to have a conversation with you.  But everybody communicates.  Every behaviour, every situation is a form of behaviour.

You have to pay attention, sometimes you have to find creative ways to unwrap what it is that they're trying to tell you.

I remember being in Fairview Training Centre, a big institution we helped close in 1999, one of the young men that lived there, he said they do everything for us, they do our laundry, they cook our meals, they think for us.  And this is really about listening to families, listening to individuals and paying attention to different ways of communication.

I'm going to ask you to try and turn a situation on its head.  So I went to Karl's house, his dad took me out in the garage there were a bunch of broken couches, he said about three times a year they had to go to goodwill and buy another couch because Karl bounce up and down and broke the couch, that was a problem behaviour, part of the reason I was there was to try and help him figure out the fact that Karl was breaking the couches.

If you begin unwrapping, what was really the problem?  The problem was the broken couch, it wasn't the fact that Karl needed to bounce on the couch, because Karl needed that kind of stimulation to be happy, it was part of his life.

So if you turn around and build a couch that he can bounce on and not break it, it wasn't a problem behaviour anymore, it was a preferred activity, something Colin needed to do.

So this is a high jump crash pit, mom made some big throws for it.  Sometimes if you look at the situation and turn it on its head and ask different questions it was the consequence of him bouncing on the couch, not the fact that he needed to bounce.

Don't blame people when their environments don't work.  You wouldn't blame this man in a wheelchair for not going up the stairs, but you will blame people if they can't use those toilets.  What is it about it that you can't use?  There's supports there, there's plenty of room for staff to help you, there's screens for privacy, what is your problem?  That you can't use those toilets.  But there are people who cannot use those toilets.

You can't fix a problem behaviour in a broken environment.  So often when you think about it, when are they going to call a consultant from Eugene Oregon to show up in New Jersey, usually because things have gone sideways, because families are at their wits end, most of the time their young sons and daughters are an adolescent, gotten bigger and stronger, suddenly the house is taking on a lot of damage.  They may have to leave their home, they may have to go into an institutional type setting, broken windows, holes in the wall, damage, no curtains.

When that is the situation you cannot make progress.  You cannot really support people in those environments until you make sense out of it and fix that broken environment.

This is a story of Anna, I like to say I owe everything to Anna.  Her parents wrote to me when Anna was three and a half years of age, she was diagnosed with Autism Spectrum Disorder, they wrote to me when she was 7, her father wrote vigilance and duct tape aren't enough anymore.  And they needed answers.

So this is a great picture of Anna, you see she has a hose there.  Water was an incredibly important part of her life.  So often I find, I almost make an assumption working with people with more significant autism that water plays an important role in their lives, of one kind or another.

Think about all the cool things that happen with water, all the ways you can control it, the temperature, the flow, you can pour it and light happens with it, it's really quite a phenomenal product and people, Sue Reuben, a woman with significant autism, says she let's the autism take her when she's with water.

The first issue in Anna's house was she was banging on the windows and the walls and her dad wrote to me and said Anna has begun to test the strength of materials, isn't that a great way to say it?  As opposed to always the document says Anna is participating in property destruction.  Property destruction feels a little different than testing the strength of materials.  Or Anna has begun to experiment with gravity, which meant she was throwing chairs across the room!

But language matters.  The language matters, how you judge people and how you think about them and this family was so respectful always in the way they talked about their daughter.  So one of the biggest issues of course was Anna playing with water, constantly in the bathroom, the bathroom floor had rotted out several times.  Constantly having to do loads and loads of towels, the brother had broken a tooth because of slipping and fall on the bathroom floor, huge amount of stress on the mom.

She talked about the autism surcharge, they got a letter from the water company saying if they didn't start using less water they were going to charge commercial rates! So it was a major problem.  And Anna wouldn't use the toilet.  7 years old wouldn't use the toilet.  This is not because it was a family that hadn't tried everything to get Anna to use the toilet, that wasn't the situation, it was just that she wouldn't use the toilet.

We tried to figure out what was it about using the toilet that Anna couldn't deal with.  At the end of the day it turned out she couldn't navigate all the kinds of sensory input happening around the toilet.

What's Rule 1 about using the toilet?  You have to relax.  But if you're claustrophobic and the fan makes noise and the toilet is cold and you feel cornered in a space, are you relaxing?  No.  And there's a lot of pressure by the way, because I'm tired of changing your diaper, you're 7 years of age.

So we made a new bathroom that addressed those issues, the floor, heated the toilet, created a space, used the colour blue, made a bathroom that she could go in, be in safely, mom and dad stress load drops down, floor drain in, didn't have to do all the tiles, shifted the environment, seven months later Anna was consistently using the toilet.

Anna loved water, did I mention this?  She loved water, she'd fill her mouth with water and spit it into the television set.  And television sets would blow up.  She needed a waterproof television entertainment centre.  We couldn't buy one, we tried, so we had to make one.  We built this.

Again the genius of the family was problem solved, entertainment centre is waterproof, that wasn't what they wanted, they wanted Anna to be able to use the television like everybody else.  They made it unlockable and kept evolving the situation in terms of her getting more and more control over use of the television set and at the end of the day, Anna uses the television in the living room like everybody else in the family.

So it's this idea that capacities change, people change, people's interest change and physical environments have to continue to change with them.  We forget how much of a dramatic effect our physical environment has on everything that we do.

It's a greater predictor of your behaviour than your personality.  You all come in here and sit like this because you're trained, that's what you do when you come into an environment.

Over time Anna's needs changed, she put on a lot of weight and she still continued to love her swing, so the most recent remodels we have done really addressed the fact that Anna is now using a wheelchair more and more to get around her home.

In fact just last Saturday on a 19‑hour day, we finished this addition, which is a little contained apartment for staff that would come and be able to provide overnight support to Anna.  So her family, who when I first met them when Anna was seven thought they were going to do it forever, they really did.  They had to.  Who else was going to love her?  Who was else was going to take care of her, who was going to take care of her when they were gone?  They thought they had to keep doing it, that was 24 years ago, dad had a heart attack.  Things have changed.

Is the family moving away?  Actually they are extending, they have given the garage to extend to auxiliary staffing resort.

Over time this is the money that was spent, remodelling the bathroom, providing enclosed backyard, entertainment centre, ultimately they are prepared over the next two years to spend almost $70,000 to extend the family, creating this ‑‑ really responding to what family looks like today.  Family of today looks different than it used to.

There are more multi‑family houses, 17% of households have someone living in the house not a member.  You have two moms getting together and sharing resources so they can be in a better place.

These are a series of specific challenges that I find myself encountering, a great deal of the work that I'm involved in relates to people with more significant intellectual disabilities, people for whom conventionally the housing doesn't work, these are often times individuals that end up in institutions because they can't be properly supported in the community, there's not environments for them in the community that work.

But you know what?  I have never met a person in an institution that I have not met their twin living successfully in community.  Never.

We don't have to send people to institutions, we have to re‑think physical, built environments, social environment, we have to make sure the changes that Victor is leading in New York.  We have to make our community whole again.  We have to make our community whole.  And those individuals are as important as part of the community as anyone else.

This is the way we think about the workplace, this is our environmental assessment process, called in to this quite frequently.  What's the most work demands doing every day, Anna's mom and the loads of towels, Carly's mom who chases her down the street because she gets out of the house and runs down the road with no safety awareness.

If you can go to that issue, address that issue first, everything begins to change, stress in the house changes.

Involve the individual, it's not always easy, and because people aren't communicating in the same way, but there are strategies and it's really important to listen to that voice.  Experts will tell you one thing, they will tell you one thing, but you really need to understand what it is that the person wants.  And you have to work at it until you can get that information.

Then assess the home and identify what's not working about the home, what's broken, what is it that people need?

Learn the six more common modifications and make an action plan.

So knowing that I was going to come here and talk to people that are really thinking hard about Universal Design, I thought what were the patterns that we typically find in our work over the years that I have been doing this, nearly 30 years now?

And we used these, the most common characteristics, the kinds of things we want to see employed in the home, that make that home more supportive, not just for people with physical disability, but people experiencing intellectual disabilities.

Eliminating hazards ‑‑ it's a pretty obvious list of things, anticipate water spill, address the problem doors, select appropriate finishes.

The most common area I work in, bathrooms.  I often say I spend a lot of time with these lectures, people talk about sophisticated things and I'm going to talk about the toilet! But it's something we all have to do and it's really important that it work, and it's often a place where there's a lot of stress, and a lot of problems that happen around toileting in one way or another.

Creating ‑‑ so many of these things are common to what you're doing already, with your Universal Design.  Places where you have a hard point for bars to be attached.  If people can do one thing in a house, I say put in a floor drain, because sooner or later the bathroom will flood.  And when you're dealing with people with disabilities it's more likely that happens, likely someone forgets to turn off the water because something else is going on, someone is playing with water and leave it on.

We call this the walking loop and again this is addressing the issue of people that need vestibular activity or different kind of motion, how they can do that, design a house to allow people to move around, it does a number of things, not only does it satisfy that particular requirement, but also allows them to engage or disengage socially, on their own terms, I might cruise by, I want to know what's going on, but I might not want to talk to you or be involved.  But I might come around a second time or maybe I'm having a bad day, and I'm angry and upset and frustrated, anxiety has gotten the best of me.  I can stay away from you in a walking loop.

The walking loop is really a very important concept that we use a lot in our work.

This whole idea about places of freedom and layers of support, there is such a passion about controlling people for their own good, controlling people for their safety.  There is a point at which we have to recognise there is a certain dignity in failure.  There's a certain dignity in risk.

We all take risks, probably most of you came here in a car, you put on a seat belt.  Emory's mom wouldn't let him move out of the house for ten years because if he vomited he wouldn't be able to turn over.  He would die.

But you take precautions, you design a bed that allows him sit up, you wear your seat belt, you think of ways of dealing with issues of freedom and of places of control.

Understand what triggers fear.  Once people become afraid, you're dealing with a human being at a completely different psychological level, their cognitive abilities aren't happening.  Their fight or flight, and so you need to understand ‑‑ and fear is legitimate.  Fear is legitimate.  There are ghosts under my bed.  You know what, there are ghosts under your bed, I'm not going to try and talk you out of it.

I will say to you what can I do about the ghosts under your bed?  Frame the bed in, he'll tell me.  A woman was kept in an institution because she was afraid of animals.  What can I do?  Fences will keep Patty safe.  It's like don't pretend that you can undo that, just take it where it is.  Meet people where they are.

Increase the visibility of the house, I can't tell you how often I say 80% of what I know I learn from parents, and this detail here, is really pretty interesting, we've used it a lot, I learned this from a young man whose name was Rasule Radpreder Willie, it's an issue of eating anything and everything all the time, in your mind you're starving to death all the time.  Of course he would get up in the middle of the night when everybody was sleeping, go to the kitchen and eat everything, so his dad took Rasule's room and cut a door between his room through the closet and his bedroom so that if Rasule wanted to go to the kitchen to get food, this door was locked, he had to go through mom and dad's room, it would wake dad up, and then dad would go with him to the kitchen.  So it kind of put the parents in this funny role as a gatekeeper, and really it helped Rasule control some of those issues, but connecting the home, knowing what's going on.

I try to do what moms do, it's too quiet back there George, what are you doing?  How do they know that?  And how can we make houses that respond in that way.

Keep things smelling good, make it easy to do the right thing.  I talk about making it easy for staff to do the right thing, make the clean up really simple.  Selection of materials again, what you're doing with Universal Design is way out ahead.

There are discoveries to be made, there are things that we can continue to learn, we did work with people coming out of the institution, who had significant self injury behaviours, head bangers, they would rub holes in their bodies, Christy Gaegos who ran the programme once said, damn it, can't I just have some soft walls?  So yeah, we can do some soft walls, so we came up with a strategy where we did some reinforcement and put a one inch of foam and exterior on that, wrapped it in and had a soft wall.

This is the most important thing.  We can make homes that work, we can make homes that work for anyone.  We can make it possible for anyone to live in a community.  But unless the Victors of the world are connecting you to the neighbourhood, connecting you to the community, you're just in a new kind of institution.  You're just in a new kind of isolation, it just happens to be your own house.

Thank you.