Sunday Talk: Helping adults with autism

By By Vincent Lupo / Special to the American Press

Current estimates put the prevalence of

autism among America’s school-age children at 1 in 50, according to

Geri Landry, president

of the board of directors of Autism Services of Southwest

Louisiana. ASSL is one of three local organizations providing services

and/or support for autistic individuals and their families. The

others are the St. Nicholas Center, which provides early intervention

for children thought to be autistic; and the Autism Society, a

support group for families, guardians and caregivers of autistic

individuals.

ASSL mainly provides services for adults with autism and has recently opened the only two homes in Louisiana specifically

for housing adults diagnosed with autism. The American Press recently interviewed Landry as well as Fred Nodier, vice president of the ASSL board, and ASSL Executive Director Krystal

McGuire.

What services do you provide for the autistic individuals in these homes?

Landry:

Basically what we have are two homes for adults with autism. We are the

only (agency) as far as we are aware of in the state

of Louisiana that do(es) homes specifically for adults with

autism. CARC (Calcasieu Association for Retarded Citizens) has

homes and there are some people with autism in their homes but

they are mixed with (people) with other kinds of disabilities.

Ours are strictly persons with autism that we deal with. Now they

may have other disabilities along with the autism. We opened

our first home in ’09 — that was the Creole Street home — and last

year we opened the second home.

It faces Louie Street right behind the other one?

Landry: Yes.

What we did we based everything we were doing — I don’t know if you’re

aware but Fred is my brother-in-law and vice-president

of Autism Services. We are both connected with autism through our

nephew who has autism, Joseph Sullivan. Joseph’s Sullivan’s

mom (who is Landry’s sister, Dr. Ruth Christ Sullivan) has 13

homes in Huntington, W. Va., for adults with autism. One is

actually for teenagers — juveniles.

But we have all been up there. We have

seen what they were doing and we knew the parents — I’ve been involved

with autism

for over 40 years in Lake Charles. And parents were coming to me

and saying “What’s going to happen when we’re gone? There’s

no place for them.”

And so we’ve studied what they were doing in Huntington and we based everything (on their program). The way we wrote our program

is based on the way her program is being run.

Some of the basic (things) we think are important about our homes that some people don’t quite understand — for example we

have one client per bedroom; we don’t share bedrooms because it is so difficult for clients with autism to share.

In Creole House we have four bedrooms

and four baths — private bath for each bedroom. We’ll take you there so

you can see

it. It is very difficult for them to have to share. So our goal is

that hopefully our clients will never have to share bedrooms.

They can have their own privacy.

Some people who have been to our homes

and have looked at what we are doing say, “Oh no, this is too fancy.

This is too this

or that. We can’t support something like this.” And that is their

philosophy. Our philosophy is we’ve got to give them their

space — they’ve got to have their space.

How do you get funding?

Landry: Fundraisers.

Community support has been outstanding. I don’t know if you remember

the “Elvis for Autism” that we did in ’09.

That helped to finish paying off our Creole House. I will tell you

that we did get a grant, the Community Support City Grant,

through HUD (Housing and Urban Development), and that helped us as

well.

But the community has been unbelievable

in their support with what we’re doing. And of course we have another

fundraiser —

this time it’s “Autism Rocks.” It’s (internationally known opera

singer) Paul Groves and his (former high school) band will

be doing it. We have not had a large fundraiser since ’09.

We do a letter-writing campaign, and we have some corporate sponsors that have been supportive from day one. Every year we

get a sponsorship from them. And that’s how we survive as far as Autism Services.

The sign on the front door of the office at 3006 Common Street says something else.

Landry: Direct

Care. Let me give you some basic information about that because people

don’t understand. In Huntington, W. Va., my

sister buys a home, she trains the staff, she puts them in the

home and she was president of the whole thing. Everything was

under one umbrella. So when we started this and I went to get

licenses, they wouldn’t license it all together. They had to

be separated. So the home is completely separated from the staff.

So all the staff that goes in the home

comes through Direct Care but we’re all on the board of both. But we

have to have two

separate entities as far as the state is concerned and it’s called

Direct Care. And the license comes from the state to provide

staff into the home. The home is not a licensed group home. It’s a

home that the clients rent to live there. It is not a group

home. It’s a home.

So what we have here is in this office

Krystal McGuire is executive director of both agencies. I am president

of the board

of both agencies. He (Nodier) is vice president of the board of

both agencies. So we tie it all together. So what Direct Care

does is provide staff in those two homes — around the clock care —

one on one sometimes share the support, sometimes there

are two clients with one staffer. We also go in the homes of

people who are on what is called the Medicaid waiver. It’s now

a new opportunity waiver under Medicaid. And we provide services

in the home and we train staff to do that as well.

Direct Care’s specialty is autism but

we service all disabilities. If you have a child with cerebral palsy and

you are on

the waiver we can provide those services. If you have a child with

severe mental disabilities; if you have someone — we have

two or three clients in wheelchairs, physically disabled — we

provide for that. So we are providing staff for about 30 clients

right now either in their private homes or in one of our homes.

I know there’s a agency named SLIC, Southwest Louisiana Independence Center. Are y’all affiliated with them in any way?

No. They are a provider like we are a provider. CARC is a provider, SLIC is a provider. There are about maybe 25 providers

in this area that they are doing some of the same things we’re doing. I’m trying to think of some of the others.

Right there on Winnie Street there are some homes that belong to — I can’t think of all the names of those places. But there

other providers in town. But we specialize in autism. We are the only one that that’s our specialty.

Nodier: Why don’t you tell him about the training.

Landry:

The training to us is so important because when parents were already

receiving services in their home they were so unhappy

with the lack of training in the field of autism. So we zeroed in

on autism. Every staff that comes through our training is

trained about autism. Even if they are going to work with someone

who doesn’t have autism they may switch some day and work

with one of our other clients so they all have autism training.

We start off with 18 hours of training and that’s on everything — ethics, philosophy, policy and all of that stuff, dress

code, you know, the whole thing.

And they get that here?

Landry: Yes, this is our training room actually.

And then before they start working the

staff we do what we call shadowing. So they follow the staff through at

least one shift

if not two depending on the client’s needs because some clients

have more needs than others so we need to really make sure

they understand the client. So they shadow a worker so they’ll

have a better understanding how to do it which is not required

but we do it.

And then every year we do 16 hours of training — up-to-date training — so that they stay up with what’s needed.

Where do recruit from? How do you recruit?

Landry: Well,

we have ads in the (news)paper and we’re with the Louisiana Work Force.

We’re on their web site. We put information

out at McNeese. We’ve been to churches. We have a hard time

finding workers like in out-lying areas like Vinton. I’ve called

the churches in Vinton and gotten some leads. Lake Charles isn’t

too bad but once you get out into the country areas it’s

harder to find workers. A lot of times it winds up being a family

member that we train.

Do the clients work because you said they pay rent?

Landry: They

pay rent and that’s through their Medicaid — through what they get from

Medicaid. And if they’re on Social Security as

well they pay rent. It’s room and board. We pay for everything

except their personal clothing and stuff. We provide all the

food, their transportation. We have a membership at Our Lady Queen

of Heaven for swimming. All of the clients go swimming

at least once a week if not twice a week. We have a really good

schedule for them. We have three clients who work at CARC

in their Sheltered Workshop. So they go to CARC and work there

doing the daytime. And one client is going to school. And the

other two clients do volunteer work like one comes here once a

week and vacuums the whole office building. We have another

one who is a shredder so he comes here and shreds once a week and

he goes to other businesses and shreds at other businesses.

That’s the hardest thing for us to find something — volunteer work for them to do. We have a client that’s not living at Creole

House but he’s one of our client’s in Vinton who works at Delta Downs. He’s in the Wardrobe Department and he either helps

count new merchandise or he may take them off the hanger and hang them up or sometimes he does shredding if there’s no new

merchandise ...

What is the Wardrobe Department at Delta Downs? Is that for the jockeys.

Landry: No,

for the uniforms the staff wears. You see what the waitresses wear ±

I’ve been there several times to observe him and

make sure things were going well. And he is so welcomed there;

people stop by to tell him hello. Everybody knows him now since

he’s been there for a few years. So they all ...

What are the age ranges of the clients to live in the homes?

Landry: Well, we have a 19 year old now. The others — the oldest is 43 — I’ll have to ask Krystal. The oldest is 43 maybe.

So the youngest is 19 to 40s?

Landry: Adults is what we call them. And we try to match it according to personalities as well.

You mean the staff and the ...?

Landry: No, the clients themselves. We have two women living at what we call Louie House. They really do well together. They can share

together; they can do things together. They both work at CARC.

We do have what’s called a waiting list. We’re not actually writing down names, but we get calls maybe once a week, “Do you

have any availability? Do you know when my child can go?”

Now what about services in the home? You said you provide services in the home. Would those be for children or also adults?

Landry: We

have children; we have adults. Any time they go on the waiver — and I

don’t know if you know anything about the Medicaid

waiver, but in the state of Louisiana, you have to wait usually 6

to 8 to 10 years after you apply before you get the services.

So it’s very seldom that we have young children because of that

waiver. But there is what is called Children’s Choice which

is — If you’re on the waiting list and you think it’s going to be

years and you need the services now you can take a reduced

rate of time of service money and start. So we have Children’s

Choice — is what it’s called. We have many children on that.

Explain a Medicaid waiver? How does that work?

Landry: You have to go apply for it through the office of Citizens with Developmental Disabilities. You have to meet their guidelines

to get the services. And once they approve that, “Yes you meet the guidelines,” you get on a waiting list.

Are they actually waiving their Medicaid benefits? It’s called a Medicaid waiver.

Landry:

It’s a waiver but they don’t — no, it’s not — they still get their

Medicaid check and services. You know, if you need dental

work til age 18 Medicaid will pay for that and that kind of stuff.

You still get the services. I don’t know why it’s called

a waiver.

Nodier: We bill the time for the personal care attendants.

Landry: We pay the staff and then we bill the Department of Health and Hospitals to reimburse us; that’s how that works. So it’s under

the Department of Health and Hospitals.

But to get our services you need that

waiver because it’s expensive. Of course, there are — we have service

people that have

the — I’ll need to bring Krystal (McGuire) in here — they have the

insurance. If you get ill and you’re at home and you need

services we have helped people with that.

What about day care? Say a caregiver just wants to go out for a day or needs to get away.

Landry: A child with a disability? Well, we have done some of what I call “sitting.” We do provide that service but that is not our

basic ...

Nodier:

Geri mentioned people are wondering what they’ll do with their kid when

they pass, and we had a perfect example of that.

We were servicing a lady in her own home, and she was 42 or 43,

and her mother died. She was in her 70s. And she had one relative

up on the East Coast. Her mother had set her up a trust fund with

her attorney in Shreveport. But there was no place for her

to go. Well, we took her in. And she’s doing quite well. Now she’s

on the waiver, and, so, they switched it from her trust

fund to Medicaid. I guess that trust fund was about drying out.

Landry: I don’t know but it’s important that they realize that our goal is to service the people who will not have a parent or guardian

around in the future. And if we don’t set it up now and get it going — I don’t know if you saw it on the news last week —

in school children now they’re saying one in 50 school-age child will have some form of autism. One in 50. Scary.

What’s going to happen to your work force? What’s going to happen to your health care? What’s going to happen to everything

if we don’t find out what’s going on?

McGuire enters the room:

Landry: This is Krystal McGuire. This is Vince Lupo.

Now what exactly is your title?

McGuire: Executive director.

Of?

McGuire: Autism Services (of Southwest Louisiana) and Direct Care.

OK, of both?

Landry: I was trying to explain to him about — he was asking the different kinds of services we provide and he was asking about someone

(with) just like an emergency type thing. And I was telling him — what kind of insurance did the lady have that we helped

out?

McGuire:

It’s long term care insurance. It’s a policy that you can buy from any

insurance carrier basically, State Farm, any of your

major carrier that carry long term care insurance. They pay

out-of-pocket for the policy up front and then once they need

the services they contact their insurance company and the

insurance company contacts us, our nurse goes out, they do an

assessment,

and then determine the need and that sort of thing. And that’s all

private pay. That has nothing to do with our Medicaid waiver

Landry: He asked what waiver meant. Does it mean that it’s waiving other services?

McGuire:

It’s called a Medicaid waiver because basically it’s waiving the

parent’s income. So essentially you can have a parent who

say is a millionaire, but, because this person falls under your

category and they meet the requirements for this waiver, the

parent’s income has nothing to with the services this individual

can receive. That’s why it’s important for a person with

disabilities who their families want to set up funds for them in

the future to set it up appropriately, because if you assign

it to that person’s name in a certain way then that goes against

them as income so they wouldn’t be eligible for these services

because they would show all this income somewhere laying around

for them.

Whereas, if you set it up in like a special needs trust or it’s not set up as ordinary income that’s waived and it doesn’t

show up, and they can still receive these services.

So don’t put it in the name of the client himself or herself?

McGuire:

Right. It’s set up in the name of the client but they kind of like have

a guardian or guarantor that’s over it--another

person--and it’s usually done through some finance agency or an

accountant or a CPA firm. It’s called a Special Needs Trust.

You would recommend an attorney?

McGuire: Usually an attorney is involved initially to get the paperwork drawn up.

Would you recommend that? That they go through an attorney?

McGuire:

Yes. You want to make sure that someone — usually an attorney who

specializes in setting up trusts and things like that so

they know exactly what they’re doing because some clients have

been penalized. You know, they’ve got all these funds laying

around in an account or something ­— a regular trust fund — and

they go to try to get these services thinking sure they’ll

get it. You know, they have a disability, and they say, “No,

you’ve got $20,000 sitting here. You’ve got to exhaust that first

before you can come over here.”

So it’s works against you.

Landry: And another thing, Krystal, is the $2,000. They’re not allowed to have – the clients are not allowed to have over $2,000

in their personal account or else they lose their program.

McGuire: I think that’s really Social Security income.

In any personal account?

McGuire:

Yes, if they have a personal account say for spending money. They each

get each month typically they get SSDI, Social Security

Disability Income, is what it’s called. They’re supposed to be

spending that each month on their personal needs and rent,

living expenses. And if they just save it, and it adds up to over

$2,000 then whenever they come to do a re-assessment they

see that extra money, that kind of goes against their eligibility.

There’s a fine line with all this that they kind of have to stay within.

Landry: And Krystal, I wanted to say what I didn’t say. Am I not right that last year there were no Medicaid slots given for the

waiver last year?

McGuire: I can’t say that. Locally I’m not for sure. I know statewide there were some slots because they were moving people out of

institutions. I don’t know that locally if we received any of those clients.

Landry: That wasn’t for individuals; that was more for coming out of institutions ...

McGuire:

Yeah, people who were coming out of institutions. They’re trying to

lower the level of restrictive. So they want to move

these people who are in higher restrictive care settings like the

institutions and things like that back into more of a community

environment. And so they were kind of creating new waiver spots

for these people to move into so they can move out to community

homes like ours and other group homes and things like that—or back

with their family if they could if they could independently

just depending on …

Statewide they shut down every one of

the institutions except for one. And so that had all of these beds,

these individuals

that they need to shift around and move. But like I said I don’t

think we received a lot of them. They went elsewhere. They

weren’t from here anyway.

But one client for instance that we did

get last year. Was it last year? It would have been 2011 right before

2012. But she

was an example of that. She was in a higher care setting. Her

parents decided this came up available, they were trying to

move these people around. So basically they shifted her down to a

lower level care , and they were able to use that fact to

move somebody else out of an institution to put her into because

they’ve only got so many slots. So that’s kinda what they

— are trying to push was to get a lot of these people out of these

institutionalized settings if at all possible.

And that’s the only way you really get new clients is getting these open waiver slots that become available for new clients

to access services …

Nodier: When we get a new client, want to explain to Vince what you do, what procedures we go through. Meeting with the parents and

so forth.

You meet with the parents and you ...

McGuire: We

gather all of the pertinent information that we are going to need to be

able to provide services. Everybody gets staff

assigned to the case that will go to the home or wherever they’re

living and work with them. So we basically have to get a

lot of personal information. Sometimes there’s really in-detail

medical information. It just depends on the client’s particulars.

And then we have to go through the wait — the Medicaid end of it,

the waiver end of it to have to go through their whole process.

We have to develop a plan. The state does an assessment to

determine what level the person is on and that level will determine

the number of service hours that their eligible for.

What are the different levels?

McGuire: It’s

six and it goes down to a Level 1. One to six are your levels with 6

being the highest needs. And that person potentially,

not always, but potentially they’re eligible for 24-hour services

meaning they could have a staff assigned to them 24 hours

a day sometimes seven days a week.

So Level 6 would be the most care they needs?

McGuire: Very high behavioral needs. One is the least restrictive in that maybe they only get a staff who comes and visits them a

couple of times a week.

They live very independently but they do have some needs — maybe they don’t drive — maybe they can’t drive. So maybe the staff

just comes and visits just three times a week to take them to the grocery store … or run errands ...

What about the adults who live in the homes?

McGuire: Most of them are somewhere between the level of 4 and 6. We have a few who are 6s that are there and a lot of our clients

… tend to fall in the higher levels because of all of the behavioral challenges that you face.

So they need more care?

McGuire: Yes

… typically when we’re reviewing clients to move into our homes that’s

kind of what we’re looking for because there are

no adults who live in the homes other than the clients. So there

needs to be staff there to address their needs. They can’t

really live independently.

And there’s four …

McGuire: In one home and two in the other.

So six altogether. And what’s the gender makeup?

McGuire: Male and female.

I mean how many of each do you have?

McGuire: There’s three males and a female in one home and two females in the other home.

Landry: That’s three and three. I think that’s what you were asking?

It was. Are they all from Lake Charles?

McGuire:

No, they’re from surrounding areas. Lake Charles and then one who moved

from Lafayette to move into the home here. That’s

a different region. We had to do transition services and things

like that because that region is governed by a different Medicaid

office. We have to get them transitioned; we have to get that

waiver slot moved over here. It’s a process but …

Are there any other group homes for autistic individuals in Louisiana?

Landry: Not that we know of, specifically only autism. Now there are group homes all over the state that takes kids and adults with

autism.

Are there any others that are being developed?

Landry: Not that we know of. I’ve had parents come from Lafayette and Alexandria to talk but it’s never been able to get anything

— it’s very difficult to get going. I mean when you have no funding you have to go and raise ...

McGuire:

And you have to have two different agencies for an agency because with

the way — if you want to provide strictly to autism.

Now if you wanted to have an agency and you already have one and

you wanted to open a group home, sure it’s a process. But

basically they dictate to you what individuals are going to be put

into your home and it’s a variety of disabilities. You

know, it’s not just autism. So just the autism program you have to

have a separate entity because, otherwise, like I said,

they would tell you, “Well, we’ve got this person here who’s

needing a group home. They have Down Syndrome or something” and

they’re going to be able to move in.

And that’s why the Direct Care comes in?

McGuire: Right,

that’s why we have to have the two agencies set up so that we can

strictly provide to autism over here so that no one

else — and it’s privately funded essentially as far as the autism

part — so no one else can come in and say, ”We need to move

person X in here.”

So the house on Creole Street was built?

Landry: We built that home.

Nodier: Yes.

And the other one was purchased?

Landry: Yes.

Nodier: Yes, and incidentally, we own all of them. Both buildings are paid for.

Landry: Thanks to “Elvis for Autism” and corporate sponsors and supporters in this community.

This building here you’re talking about?

Landry: Our two homes.

Nodier: Yes, this building here and the two homes.

Landry: And I really think it’s important that we stress community support. I mean they ...

McGuire:

That’s the only way that it’s been done. I mean people from the

community that have given their time, their donations, to

support these programs. And getting it out there — the word out

there — that these are right here in your neighborhood. This

here’s a big deal because a lot of people don’t even realize it.

And they don’t understand the nature of ...

That’s part of what I’m doing, hopefully. Getting it out there.

Landry:

And what I want Krystal to help me with. We were talking just recently.

A lot of people do not realize our specialty. And

because we don’t have autism in this (Direct Care) name, when

they’re — correct me if I’m wrong — when they receive the word

their child now is on the waiver they’re about maybe 25 or 30

agencies — they have a list and they have to go — I want this

one — just through a list. So if they look at this they have no

way of knowing that we specialize in autism. We’re even talking

about maybe changing our name someway to put the word autism in

there to alert parents that we are specializing in autism.

And so I think it would be real important if he (Lupo) could

stress the training and how much we do to work with people in

the autism community.

Right, because if I just looked at that I wouldn’t think ...

Landry: No, you wouldn’t, you wouldn’t. Now if ...

The other name, Autism Specialties, --

Landry:

Yeah. But if you have a case manager who knows that we specialize, and

they’ll say you realize that these people do (specialize

in autism), then they can make the choice if they want us or not.

But now we’ve had so many changes most of them don’t even

know who we are and that we can help them.

McGuire: Yes, there are a lot of new people here who have no idea.

Landry: No idea.

McGuire: I think there are a lot of the younger parents who have younger kids who aren’t yet even receiving these waiver services

so that when they do become eligible for the waiver services they know that hey there’s a provider that focuses primarily

on autism.

How do you go about getting the waiver?

McGuire: You have to start out with — once your child receives that diagnosis you basically have to the Office for Citizens with

Developmental Disabilities OCDD for short. And they are kind of the front door for all of the services. You walk in there

and it’s a one-stop process basically there. They gather all of you information and start your ...

And the diagnosis has to come from a medical professional?

McGuire: Sometimes it starts in the school system which there it’s a team approach basically. There’s a person there who specializes

in these diagnoses.

Or some of them go to a physician and

maybe if their pediatrician started out kind of, they may make them go

somewhere else.

But eventually it links back to the school system because that is

really where they start receiving these in-school services,

typically. There have in fact been a few issues where the doctor

says this and the school system says this but for the most

part they are on the same page.

We get phone calls about that at times.

Parents who think something is going on with their child but they don’t

know what

direction are we going in. We’re trying to provide as much support

in that area as we can just to guide them. Because if you

get a phone call from a parent who has a 17-year-old who is in a

school system but they want to kick them out of the school

system because while his behavior is, he’s old enough, he’s been

there long enough, and they’re asking, “What can I do with

him. I can’t handle him at home any more.” But he never acts on a

waiver or even gotten on a list. They’re in a bind; there’s

nothing that we can do. And nobody can afford it really; most

people can’t afford to just pay out of pocket to have their

child … and get that staff for 24 hours a day.

When do they start diagnosing or realizing that there is a problem?

McGuire: Eighteen months is the typical

starting point for most people. The pediatricians now do a screening at

18 months.

Kind of a requirement thing. I don’t know that it’s a mandate. I

do know that they do screening at 18 months and that’s your

initial kind of cue there. Now if you start seeing things before

that they may wait a little bit , but ...

For everybody? For all babies?

McGuire: Yes. It’s a general thing now days.

Landry: It’s a mandate, I think, through the pediatricians’ offices.

McGuire:

But they’ll do that screening. But that doesn’t always — some of these

things may not start to develop until after two years

or so. Or once they actually … a lot of them they don’t want to

admit or see that’s something’s going on with their child.

It’s hard you know. So they may get into the school system with

the parent kind of reluctantly watching from the side and

never actually moving forward and then they get into the school

system and they you start getting phone calls from the teacher

or peers and sometimes things are done that way. So it really just

depends.

I know in my experience the earlier you

get even the diagnosis even if it’s not lifelong the earlier you get

into step and

moving toward the therapies and things I think that’s better and

research coming out more and more every day that shows that

the early intervention stuff is really catching some of these

people that otherwise may not have been so progressive as they

have been.

You said the diagnosis may not be lifelong?

McGuire:

I’m saying, in my opinion if it were my child if I thought there were

some things going on and somebody labeled it autism

off the bat and we started getting some services and then maybe

later on a doctor comes out or somebody comes out and says,

“Well, I don’t know if it’s actually autism but it’s something

similar or it’s this or maybe it was just his hearing was off

and that’s why he wasn’t speaking. But at least you’re having

access to services, you’re getting somebody involved with this

child. You’re not just saying, “OK, let’s just wait and see what

happens.” And then wait until something — that’s what I mean

by that. You’re being exposed to some services that are going to

potentially help regardless of the ultimate end-all tends

to be.

And a lot of parents recently with the high functioning individuals have seen that these … have drastically improved their

child’s prognosis … So it’s something is happening. It’s mainly having access to that information.

Landry:

You realize when you say the word autism there’s such a wide spectrum

here. I mean you may have someone whose severely mentally

handicapped up to PhDs. On they’re on the spectrum. So that’s why

it’s so hard to — I mean there’s no medical diagnosis. It’s

not because your ears are this or your stomach is that. It has to

be all from observation so it makes it very difficult to

come up with the right diagnosis.

Most of the people with Asperger’s,

that’s the higher functioning, don’t even get that diagnosis until

they’re in their early

teens. They’ve been “weird and different” their whole life. But

they don’t actually have a diagnosis of Asperger’s until they’re

in their teens.

McGuire:

In some ways it is problematic because you’re sitting here thinking

about all the years that have gone by that services were

available but you didn’t have that label to get those services. So

it’s a Catch 22 because some people don’t want their child

labeled. And then that puts you in a different category sometimes.

So it’s hard for some people.

Nodier: One of the things is that when a client moves into our house the parents just get a new life.

Landry: Yes. Very much. I had a mom tell me that that was her first time she slept all night in 32 years.

McGuire: That’s crazy, huh.

I can believe it though. They have peace of mind?

Landry:

Well not at first because I think at first they’re very antsy. It’s

scary to let go. And even though they trust us it’s still

scary because they’re not sure how they’re child is going to

adjust to the move and the change. But we do take a gradual approach.

They calmly learn about the house. I think our last one spent a

couple of nights there before he actually moved in.

McGuire: The clients grow as well. They grow as well. You’ve lived in a home with your family with everyone doing their best that

they can given the situation and then you move them into this home and they’re not under that ring any more of Mom and Dad

or whomever is the caretaker and you start to see their behaviors change. They grow more mature and independent. Sometimes

you’ll have Mom and Dad come back and “I can’t believe they’re doing that or eating that.”

That’s got to be extremely satisfying.

McGuire: It is. It is. It’s very good. That’s what I think is one of the most rewarding things to see the parent’s life change and

to see the individual’s life change.

Now what about cooking and all of that. Do you have staff to do that?

Landry:

They’re supposed to help do what they can. And we have some that are

very good and some of them are not good so they set

the table or clean the table. One of them likes to load the

dishwasher. It depends. And they take chore nights. Each one is

assigned a night to help with the evening meal.

What about grocery shopping?

Landry: They go with staff.

McGuire: They go independently to the grocery store with their staff in their own vehicle with their items. Maybe it’s a community

meal that they’re all doing at the house but they each have their own items that they would go and purchase.

They have dinner time when they all eat together?

McGuire: We try to have a family meal if it works out that way. A lot of them though—the autism part doesn’t go away. So they’ll all

sit down at the table and their staff will be there and everybody will be there but --

There’s not too much communication?

McGuire: No. But at least it’s an effort. And at least they’re sitting next to each other ---

Landry: But now they’re sitting at the table whereas before they (motioning as if eating quickly) and then leave. Now they’ve learned

they have to wait ...

McGuire: They have to wait for the others to finish and — short steps, you know, but … good results.

Landry: Should we explain to him the difference in the three organizations and how we’re working together?

Nodier: That’s a good idea.

McGuire: It’s important I think to know in the community that you may be approached by an individual for an autism organization. But

like we were telling you we focus primarily — we do provide services in the home to younger individuals with autism — but

our homes are specifically for adults.

We have the St. Nicholas Center in the

community and they provide early intervention services. It’s called ABA,

Applied Behavioral

Analysis, and they do a lot of work — lots of therapy one-on-one

with these clients early on.

So there’s that organization, and then

we have the Autism Society which is essentially a support group for all

ages and families

and populations with autism. They’re kind of the people we would

refer parents to. Any question about autism. I think my child

may have autism or where can I ask this information about autism?

Or I need to talk to another parent who has a child with

autism because I’m experiencing this. So we would refer them out

to them and try to get them linked up with other individuals

that could …

Landry: We have their (Autism Society’s) lending library here.

McGuire: Yes, They meet here. They have their monthly meetings here in our office as well as the lending library, all of their autism

information, books CDs, DVDs.

Landry: And they will send people out into the schools to help the parents or whatever. That’s what that group does.

The reason I’m saying that is, for

example if I go to you and ask for a donation, you say well I just gave

to autism just

last week. You gave to (St. Nicholas Center and Christy Papania

Jones). She works with mostly young people. Southwest Autism

is for families and we’re mostly for adults. That’s how we try to

separate in the community. But we’re doing a walk on the

6th of April, the three of us, and it’s an awareness walk for

people to understand that we (the three groups) support each

other. We’re not out there fighting in the community. We’re trying

to support each other.

Nodier: There’s no overlapping.

Landry: No overlapping of services of the three groups basically. So it’s important that the community understand that we are three

separate groups working together to provide the total ...

McGuire:

We try to participate and attend each other’s fund raising events and

that sort of thing just to kind of show that they’re

different services and it’s not a competition thing or I’d rather

go and give to Christy because I know her versus—you know

what I’m saying?

It really depends on the person, too.

If you have an adult with autism then maybe you’re more inclined to want

to give to

this program because you want your child to eventually move into

one of these homes. Or if you have a young child and you’re

just starting out it might be elsewhere. It’s good information to

have.

Nodier: But you know I’ve been out in the corporate world to try to solicit donations and contributions particularly for our fundraiser

and quite frequently they’ll say , “Well, I just gave to autism. Then we have to explain it …

Landry: There is definitely a difference in the services that we provide. We don’t overlap.

Nodier: We stress there is no overlapping. So it’s not three people doing the same thing.

AUTISM ROCKS FUNDRAISER

When: 6 p.m. Sunday, May 26.

Where: L’Auberge Casino Resort.

What: Cash bar, live auction, concert and dancing.

Who: Paul Groves and Mirage playing ’70s and ’80s rock ’n’ roll.

Cost: $50 for people 21 years or older. Tickets may be purchased online at AutismRocks.Eventbrite.com or by calling ASSL at 436-5001.

Corporate sponsorships are available.