A Good Life

- [Announcer] A Good Life is presented as part of Move to Include, a partnership between WXXI Rochester, New York and the Golisano Foundation, working in communities to promote awareness and inclusion for people with intellectual, developmental and physical disabilities.

- My name is Kate.

- My name is Remi.

- My son is Elliot.

- My name is John Tran.

- My name is Marsche Johnson.

- My brother is six, and his name is Luca.

- I'm 14 years old.

- 19 Years old.

- I'm 10.

- When I grow up, I want to be a filmmaker, YouTuber.

- I want to work with dolphins.

- I want to be a dancer.

- I want to work with kids.

- I'm gonna be every single scientist there is.

- In 20 years, I want him to be a productive member of society.

- I'd like him to lead a happy life.

- I'd like her to have the option of choosing her future.

- I want him to be included and I want him to belong.

- You know, I just want for him what everybody wants for their kids.

- When Maddie has grown, I want her to have independence.

- I'd like him to be able to just have a typical life.

- My dreams, I want him to have an easy going life.

- I want him to have friends, family.

I want him to be loved.

- I want Kate to have a really good life.

(gentle music) - Isn't that what we all want?

A good life.

Isn't that what we want for those we love, for our families, and isn't that what people with intellectual and developmental disabilities have been working so hard for?

And their families have been working right with them to make sure that things get better.

We've made great progress, but there's still a long, long way to go, and it's only in recent years that we've seen the phenomenon of people with disabilities living longer and outliving their parents and caregivers, and so we've got to think ahead.

So what is life gonna be like for people with disabilities in their 60s and 70s and 80s?

Some of these people are living hard lives already with stigma and isolation.

- My name is James Rickard.

I am 73 years young.

I was born in 1947, two months early.

I wasn't supposed to live.

Mom was not supposed to live.

The doctor said take him home, he's going to die anyway.

The doctor did not have a positive life for me.

I really don't know what it means, but I have Down Syndrome.

- Jim's my younger brother.

He's the last of four of the family.

I came right before Jim, and he was identified with Down Syndrome early on in his life, but as I think he'd say, I really don't know what it is, and he doesn't, and that's the way he was raised, not knowing that he has a disability but knowing that he has a lot of opportunities.

Mom took care of Jim of course for the greatest portion of their life together until there came a point in time that she started to fail and Jim fell into some of those roles of taking care of her rather than her taking care of him very quickly.

- I miss my mom.

I took care of her for 24 years.

I cleaned the house, did the gardening, bathe her, dress her, and it was hard to see her go down.

- With the extended life expectancy, people like Jim are living longer into their 60s, 70s and 80s.

Part of the reason is better medical care, better support systems.

The Baby Boomer generation.

One example of what is happening is if you look at New York state, half of the people being served are over the age of 50.

Oh, you're tearing the room apart.

- Yeah, it's a sad thing.

I can't remember now, it's either 15 or 17 years you've been with Lifespan.

- I've been here 20.

- When Lifespan decided to close down or was forced to close down the program for the adults in the community, I was desperate.

I knew that he needed something to occupy his time.

He needed the social aspect of his life.

He needed to interact with other people.

What's up, buddy?

And that's why I was so happy when I remembered Holy Childhood.

- You got your artwork over there.

- There are activities there that these men and women can do that enhances their self-esteem.

- It's kind of hot, so be careful.

- I'll be right out front, just where I dropped you off, okay?

- Okay.

- See you later, have a good day.

They need something to take them away from the isolation, as well as the loneliness of their independence and being alone and sometimes shunned by other peoples in the community because of their differences.

- I don't think that this is because of Jim's age.

I solely think that some of this because he's disabled.

We start lacking physical touch, we start lacking human connection, and so he needs that, and so lacking those fundings for those kind of programs really makes you and highlights how worst of human are considered to be in society.

- People are often sitting at home doing nothing, and sitting at home can result in isolation, which could also lead to depression.

We need to make sure that we have programs that help people get the life that they want.

- [Terry] My fear for the future is that I've noticed some cognitive decline in Jim.

You'll tell him something one day and he'll have forgotten it two days later, or you make a suggestion to him for this might be a better way to do this, and he may do it once and then forget about it.

If the cognitive disability continues, then he's going to need more focused attention for the rest of his days.

- Functional decline, including cognitive decline, is something that happens to everybody.

We don't all have cognitive decline, but all of us decline in function one way or another.

The issue is that in the world of developmental disabilities, aging to the point where you have that kind of decline is a relatively new thing, so there isn't that much research to help us understand it.

- [Mom] What her future looks like, we don't even know, because what we see adults with Down Syndrome today doing they weren't doing 40 years ago, so what will it look like 40 years from now?

I don't know, but I do think that it will be a rich future where she is not just a beneficiary but she is also a contributor, whether we are around or not.

- [Mom] My dreams and hopes for Elliot are that he leads an enviable life.

The first time I heard that phrase, that a disabled life can be an enviable life, it was a real game changer for me because it can be, and I want him to have an enviable life that other people can aspire to and look at and say this is what it's all about.

- Historically speaking, people were afraid of people with disabilities and difference.

They didn't understand them.

We were just ostracized in society.

So what doctors kind of train folks to do is to send them off to institutions so that we didn't have to see them at everyday life.

We didn't have to get used to them existing within us because they were put away in institutions and sometimes prisons.

It really just depended on where you were in the world at the time.

- From the 1850s through the late 1940s, people with intellectual disabilities were portrayed in uniquely negative ways, as defective, immoral, oppressing danger to the nation.

Social reformer Amos Butler in his presidential address to the National Conference on Charities and Corrections argued feeblemindedness, that was the term used at the time for people with intellectual disabilities, produces more pauperism, degeneracy and crime than any other force.

Walter Fernald, who was President of the American Association for the Study of the Feebleminded, declared the most important point is that feeblemindedness is highly hereditary, and that each feebleminded person is a potential source of endless progeny of defect.

No feebleminded person should be allowed to marry or become a parent.

So these views are rooted in eugenics.

Eugenics was a social movement which sought to improve the quality of the human population by encouraging breeding by those who are seen as fit, upstanding citizens, while imposing institutionalization, sterilization and other forms of social control on those deemed unfit.

Not only did eugenicists castigate people with disabilities, but they stigmatized the entire family and lineage.

If disability was hereditary, the whole line was tainted.

So disability became a source of deep shame for families.

As people with disabilities were increasingly seen as dangerous and defective, people tried to remove them from their communities.

Institutional populations grew, but state funding for them didn't keep pace, leading to overcrowding, poor hygiene, abuse, neglect, a lack of treatment, education, even basic activities.

Despite these conditions, medical professionals recommended institutionalization as early as possible in a child's life, at birth for children with Down Syndrome.

Parents were told they didn't have the skills to raise disabled children, and that trying would destroy their homes, so many parents institutionalized their children due to shame or because they believed it was the best thing for their child or because they had no other option.

So by the late 1940s, mass institutionalization, compulsory sterilization and the denial of rights had become the cornerstones of disability policy.

- [Warren] My brother's name is Gary Charles Loeffler, and Gary's 66 years old.

- You can put one in each bucket.

- [Child] Trick or treat.

- Gary is one of the most endearing people I've ever known in my life.

- [Child] Thank you.

- [Warren] People love him.

He just is kind, he never says a mean word about anyone.

He just loves everybody.

- Go ahead, put it right in.

- Here we are, trick or treat.

- That's my mom.

That's Buddy.

He's from the Adirondacks.

I came from the Bronx.

I lived in the Bronx.

Me and my brother grew up in the Bronx together.

My teacher took that in school.

This is where I graduated from.

This is my big brother, Warren.

He's my guardian.

We had to go to court for that.

This is Disney.

This is Herbie.

This is a parade, and that's for Herbie.

- You ready to eat?

- Yeah.

- My mom often spoke about who's gonna take care of Gary when I'm gone, and I would say mom, I'm gonna take care of Gary when you're gone.

And she said oh, stop.

Nobody can take care of Gary like I can.

And I would say you're right, nobody can take care of Gary like you can, but somebody's gonna have to take care of Gary.

And my job is to make sure that Gary is always taken care of, and that's the best that I can do for my brother.

I have a letter that she wrote to me that basically said, I don't know how long I'm gonna live and I don't know who's gonna take care of Gary when I'm gone.

She lived 'til she was 95, but she made sure she got me that letter by 75.

I saved the letter 'cause I just thought it was such a precious memento of my mom reminding me of what my responsibilities were and that nobody could take care of Gary like she could take care of Gary.

- Recent statistics that we have say that somewhere in the neighborhood of 50% of people with intellectual development disabilities are being cared for by siblings over age 50, and about a quarter are being cared for by siblings over 60.

Those numbers are only gonna increase with the aging of the Baby Boom generation.

Now Gary is lucky to have a brother like Warren, because some families grow up assuming that the siblings are gonna be involved in care of the person with developmental disability across the lifespan.

But in other families, that doesn't happen and siblings find themselves dropped into this role, completely unprepared and have a learning curve that's so steep that it devastates the whole family and nobody knows what to do.

- [Warren] As my dad got older, he became blind and he couldn't walk very far, and so Gary became his legs.

Dad became real hard to live with toward the end of his life.

He was in a lot of pain, and Gary began to protect my mother.

- I would stick up for her in case things didn't go right.

My dad was not himself, so I used to stick up for her.

At the end, he wasn't himself.

I was more closer to my mom than him.

- Letting my disabled brother take care of my parents has that aspect of are they gonna be safe?

So one of the things we made sure was Gary knew how to dial 9-1-1, and we practiced it, and the 9-1-1 people were very understanding.

- I had to call 'cause she had to call and see, and I called 9-1-1 to see if I could get some help for her, but she was, she's up there now with dad.

- [Warren] When I think about aging for myself, I feel like I have some control over my aging, of planning my future, and resources to take care of myself.

Gary doesn't have that capacity, so things are just going to happen to him that have to be in place that are protocols that are followed for people in his situation, and they're not in place.

There are guidelines and you hope for the best and it's as good as the staff you're able to hire at minimum wage, so there's a real problem in providing care for people over time, particularly as they get older and they become more dependent on those around them to support them.

I want to make sure that he has the same experience of aging and the same joy of having a life well lived that I have.

- [Mom] The future, I just wish him, he will able to take care of himself and leads a happy life.

Very simple.

- [Mom] My concerns are for the support system.

I need her to be safe and cared for, and I need her to have a support system in place that helps to make that happen.

- [Mom] I'd love for him to work in a location or a place that he feels fulfilled, and I would love him to have a large support group of friends and family that can surround him.

- [Mom] My daughter has always said that she has no problem taking Luca, and she's gonna buy a house and they're gonna live together.

But you know, my hope is that he'll be independent and that there'll be a support system around him, just like we have our own support systems around us through family and friends.

(gentle music) - Oh, what they're saying is that because he won that race, the championship, they couldn't have a big celebration because of COVID-19.

Well, Jeff, Jeffrey is my middle son.

He'll be 52 in February of this year.

When Jeff was born, we asked the doctor about it and he said well, I think but I'm not sure that he's Downs.

He said I would like to do some tests and blood work to be sure.

- We had him tested and it came back that he was a trisomy 21, which is a Down Syndrome diagnosis.

Charlie is the oldest and he's three years older than Jeff, and Gary is the youngest and he is three years younger than Jeff.

The pediatrician we had said that his life expectancy at that point back in 1969 would be about 19 years old.

- We were given the choice of either raising him ourselves or putting him in an institution.

We never even considered an institution.

We always thought after we knew even what the problem was that he would be with us.

The main thing that has kept us from doing any financial planning is the restrictions that are put on by the state and the federal and social security administration in what he can have.

So it's hard to plan.

We haven't done that.

- I think the concerns that Jeff's dad has are very valid.

I would say that they are comments that I hear often.

I think that parents can sometimes get lost in the alphabet soup, all the abbreviations and points of entry for government benefits, and it certainly is valid, his point about very real income and asset restrictions for individuals with disabilities, and it makes it incredibly hard to know how much should I leave my child if I'm able to leave anything for them, and am I gonna get penalized for it or is my child gonna lose their healthcare because I tried to do what I thought was a good thing for my child.

I think that there's a lot of confusion, often starts with frustration, and confusion is not far behind, just because points of access to government benefits is not always easy, but it's not impossible.

I think working with the right type of professional can help you understand the workarounds that do exist in planning.

- [Cooper] Gary and Jeffrey, especially when they were younger, Gary taught him a lot of things because Jeffrey looked up to him.

- [Lois] If something happens to us, and of course Jeff's attitude is nothing's happening to you, Gary and Andrea, not just Gary, said that they would be the person to step up to and become guardian when something, when we no longer could.

- So what we're gonna do is we're gonna sit down and we're gonna have a little interview.

Is that okay, for the film?

- Yeah.

- Are you sad to leave mom and dad?

- I'm happy.

- You feel happy.

- What do you think mom and dad are gonna do when you're living in Newark?

- [Andrea] Are they gonna cry?

- No.

- [Andrea] No?

- Hey, how many years have you lived in mom and dad's house?

- 50 years.

- [Gary] 50 years, oh man.

You're an old man.

Are you old?

- I'm an old man.

- [Gary] You're an old man, I know.

- You ready to move?

You gotta be over Newark at one o'clock.

Okay, goodbye.

About 10 years ago, we did try having him move into a community residence.

He was not happy at all and he came home.

So when this house became available, it was all Jeffrey's decision.

I don't know as we'd even asked him for sure if he really wanted to move.

He just said that he wanted to move into that house.

- It's just, you know, we've had him 50 years.

It's not like he's, it's just gonna be hard.

- Put it in the trailer.

I know, be careful.

- [Lois] I think it's a decision that for our time of life and our age, we gotta let him try it.

If it doesn't work out and he doesn't like it, he still can come back home, so we're gonna try it.

- I think the timing couldn't have been better.

We've talked about it a lot.

We can't do with him and for him like we used to, and it bothers the heck out of me.

I'm sure it does Lois too, but he seems to be bored at home more than he used to be, so I'm thinking the timing couldn't have been better for this.

He's ready for it.

- Give me a hug.

- [Cooper] I don't know if I'll ever be ready for it.

- You call if you need us, okay?

- I am.

- [Cooper] But it's the best thing for him, so we're hoping it works out.

- Okay, love you.

- For me, as a person with a disability, the longest standing argument that I've had with my parents is that I am independent and these are the things that I want to do.

My life is a constant show and prove.

He is at this stage where he is showing and proving in this group home, and they have to give him the opportunity to be able to do that, that dignity of risk.

And so change, yes, is inevitable.

Change is happening socially too, like in society, right?

It's changing because there's so many different services or whatever, or ways to use money and funding so that you can live a full life, but you're so afraid of that because you've been burned before.

It's like you're walking a fine line between what has happened historically and now what this new change looks like.

It's like a changing of the tide.

Like we're not afraid that the tide is coming, but we are afraid of how high the waves might be.

Change is hard.

- [Man] And I hope that in the 1960s, these years will be known as years in which the United States took the leadership in the great effort to make it possible to discover what we can do to make these boys' and girls' lives more hopeful and fruitful.

- A child born in 1970 arrived at the cusp of massive systemic change in our treatment of disability.

Fear and stigma had silenced many families, but times were changing.

The United States was experiencing a new era after World War II.

As economic and cultural norms were shifting for much of the country, the institutionalization of children with disabilities faced increasing criticism.

Access to community-based education and services grew for some children.

Facilities and schools functioning as institutions were still seen as viable options for other children with disabilities.

This was especially true for children from families without resources and from minority populations.

- There was a massive white flight into the suburbs, as with the GI Bill and other forms of federal subsidies.

There was a huge transfer of wealth to resettle white ethnic immigrants into the suburbs, and so there was a siphoning off of huge amounts of resources and infrastructure, transportation, education, to suburban areas.

What these institutions turned out were places that were overcrowded and understaffed, so they became merely warehouses of children, places of disease, places of flagrant violence, sexual abuse, so the allure of these places as being safe spaces for families to admit their children, by the 1950s and 1960s, that started to subside and America sort of understood what the reality of these places were.

- [Allison] Families of children with disabilities began organizing as never before to advocate for legislation that would provide their children with rights and access to resources.

In 1950, a group of empowered parents formed the Association for Retarded Children, now called The Arc, which would come to be a powerful voice in disability rights, activism and legislation.

By the late 1960s and early 1970s, parents began using the courts to claim rights, arguing that people with disabilities should have the same rights and access as able-bodied people.

Disabled activists and parents were building a growing infrastructure of community-based services and establishing a civil rights movement for people with disabilities.

In 1973, the passage of Section 504 of the Rehabilitation Act marked a profound shift in disability public policy.

People with disabilities were seen as a legitimate minority group, subject to discrimination and deserving of basic civil rights protections.

By 1975, congress passed the Individuals with Disabilities Education Act, granting children with disabilities throughout the nation the right to a free appropriate public education.

The Americans with Disabilities Act was signed into law on July 26th, 1990 by President George H.W.

Bush.

The ADA is considered an equal opportunity law for people with disabilities, and it aims to level the playing field for people of any ability.

- People with disabilities were still victims of segregation and discrimination, and this was intolerable.

Today's legislation brings us closer to that day when no Americans will ever again be deprived of their basic guarantee of life, liberty and the pursuit of happiness.

(crowd applauding) - [Allison] This progress was so important, but transitions themselves are also precarious.

- Our struggles are not over.

As many people in the Disability Rights Movement will tell you, we're still in a transitional period, that despite legislation, despite many changes, disability affects different communities in different ways.

- Okay.

- So we're gonna, we're gonna do.

- When we flip it up, it's gonna flip up to the blue side, so we're playing on the blue side, right?

- Girls against the guys.

- [Tom] Girls against the guys?

Okay, all right.

Oh, Amy is gonna go on one of these in July.

With Will.

- A date.

(group laughing) - [Amy] My name is Amy Clark, and my age is 46, I think.

- Amy's next.

- I have a great family.

I like them all.

They've been supportive about my decisions in life.

- Family has been one of the keys in Amy's growth and success, because we've all been on the same wavelength and we're fortunate that two of our three other children are in town here and able to support us and support Amy.

She's a very happy person.

She has a great sense of humor, but I think the one thing that has really benefited her over the years is that she's a competitive person, whether it's board games or outside games at home or Special Olympics.

I think that's helped her gain a lot of self confidence and friendships with the people she competes with.

- [Barbara] The opposite of implode is explode.

- Okay.

In the dry bowl, where are we?

Will, in the dry bowl, we need nine cups of oats.

All right Amy, you do the next one.

Two and one quarter cups packed brown sugar.

- [Amy] I work in the bakery.

- I think it gives her a good feeling, and she likes the socialization of being with peers and she likes the idea of a paycheck.

It's the sense of independence and it's the sense of having structure, getting up, getting to work.

Our other kids are self-reliant.

We wanted her to be as well, and this has been perfect for her, it really has been.

- The goal of most families, if not all families with developmentally disabled children is to have them as self-reliant as possible so they don't have to be as dependent on their parents or family.

- Amy's come of age at a very different time than Jim and Gary, and Amy's found her voice.

Now some of that is Amy, just the strength in her character.

But a lot of that is the wonderful love that surrounds her with her family and the support services that have been part of how she has developed.

She's aware and she's got a voice and she's a self-advocate and she sort of embodies what self-determination is all about in this new world for people with intellectual and developmental disabilities.

- [Woman] Amy, I did not get the second half of your food tracker yesterday.

- I'm doing it right now.

- [Woman] Oh, you're doing it right now.

- [Barbara] We finally said, you know, it's time for Amy to branch out, and so that's when we made the decision to look for a place, and we found a place, and Katie was the perfect roommate for her.

They have so much in common.

- Okay, so for breakfast this week, what do you guys want to do for breakfast?

- I have cereal.

- I don't have cereal, but I did have oatmeal.

- [Barbara] We got them together, and they both love music.

They love to go to concerts.

They love the Buffalo Bills and it's a happening on Sundays in the wintertime.

They're dressed from head to toe in their Buffalo Bill regalia, and they just get along.

(both cheering) - [Tom] We felt that she had the ability to live independently with support staff, and it's proven to be very successful, frankly.

She prefers to be in her house than spending time with us.

- [Woman] Stretch those arms, arms are straight and legs are straight.

- So you said you like being independent, and that's one of the reasons you like being at Queensway on your own.

- Yes.

- What does that mean for you to be independent?

- Oh man, that's a hard question.

- [Susan] Take your time.

- You have your own space.

- Yes, I get my own space and my freedom.

- [Tom Jr.] Is there anyone bossing you around?

- My parents?

Can I say that?

- You can can say it, but they're not there bossing you around, right?

So do you like being independent from them sometimes?

- Yes, yes I do.

- [Susan] Doesn't mean you don't love them.

- No, but I still do.

- Of course.

So you know I manage your money, right?

Like your bank accounts and stuff, and you have some extra money sitting in your account.

Are there things that you want to do if you have some extra money?

Like what would you want to use that for?

- [Susan] You have a wishlist?

- Yes.

- A long one?

- But I'm not 50 yet, though.

- Oh.

- Well, tell us about that.

What's gonna happen when you're 50?

- I want to save my money to fund my wedding someday.

- [Tom Jr.] Okay.

- Bill is my soulmate and he's my best friend and my partner, and we work together.

He's very tall.

He makes me happy.

He makes me laugh.

I love him to pieces.

I do want to get married someday, 'cause I don't have experiences like my sister has and my brother, and I always look up to my sister and my mom 'cause I do want to get married someday.

- I think you talked a little bit how you'd like your life to be like Sue's or like mom's, right?

- [Amy] Yes.

- Do you want to ask her about that?

- So what about our lives do you like, or what do you want for you that we have?

- I want to follow your footsteps and my mom's footsteps.

- [Susan] Okay.

- In general.

- Oh.

- That's sweet.

- Yeah, so what sort of things do you want to do?

I mean, what does that mean that you want to follow in our footsteps?

- [Tom Jr.] What kind of life is that?

- I want to have a relationship with my guy friend, and I'm taking that class I think.

- Oh yeah?

What class?

- [Amy] I got a letter.

- Is it like about how to have healthy relationships?

- Yes.

- [Tom Jr.] I think that's smart.

- [Susan] Yeah, one step at a time, right?

- Yes.

- For families working with adults with developmental disabilities, there's this constant tension between protection and giving a person freedom, and making sure that the person is safe but also having the opportunity to make mistakes is a really problematic thing for families.

But for the individual, I want the right to make mistakes for myself and learn from those mistakes, but I want my parents to be there to provide a backstop.

It's a real challenge.

- I want him to be able to just have, find someone that he loves if he finds someone he loves.

Have a job, just be able to have a very typical life that a normal adult would.

- [Mom] I advocate a lot for him and I feel that I'm his voice.

I want him to have his own voice, but I want him to know it's okay to ask others for help.

We love him very much and I hope I pass that on to him and he'll be able to pass that on to others as well.

- [Mom] I want him to be able to navigate the world in a way that makes him safe.

I want him to be aware of what's going on, but not afraid to live and not afraid to take chances.

So I want him to be happy but also safe.

- Hi, Marsche.

- Hi.

- How are you doing?

- I'm fine.

- [Lawana] You ready?

- Yes.

- [Lawana] Okie-dokie.

- Okay, Marsche has a self-directed budget with the support of an FI and broker.

Marsche lives with her mother and her younger sister.

- My daughter's name is Lauren Marsche Johnson, and she's in her 30s.

She's classified as having autism spectrum disorder.

Marsche is quiet, but funny, kind.

She's a gentle giant.

Very gifted and artistic and loving, has trouble sometimes expressing herself though, but just an all-around great young woman.

- [Woman] She's good.

This came out this budget year.

How do you like those, Marsche?

- [Lawana] She said, how do you like the rower?

- Good.

- [Woman] You like it?

Good.

- Yes.

- What about the bike, do you like the bike?

- Yes.

- Earlier this year we had a Zoom call.

Typically those are done in person, but it was an opportunity for her service coordinator and her fiscal and intermediary, the people that handle her self-directed budget.

We all get together annually and plan for her services for the year, if we've got enough funding and what are some of the things that Marsche wants, may want to do for the rest of the year.

It's important for her to be involved with that discussion because she is a player in her own life, and it's really about her.

It's centering around what she wants to do, what she likes to do, not what we as a team may want for her to do.

So it's important that she be right there, part of those discussions and we can ask her questions.

She may not be able to elaborate, but she can show joy or happiness when we hit right on something that she may want to do, so it's important that she's there.

- As a woman with a disability, what I've learned is that I have to be in every conversation that is about me, that I am the lead actress in my movie and everyone else is a supporting cast.

And those who can't support that, then they cannot be part of my cast.

I have to stand tall in all the decisions that I want, and sometimes it bites me in the butt.

Sometimes it's not the easiest and they do cause some riff between me and my parents, but it's something that I've had to learn to do.

So if my mom says I can't swim without a life jacket on, I'm diving in the pool without a life jacket on, 'cause she's going to have to learn that I have to take that risk.

I have to try.

And so I've seen this a lot in my life, and so for Marsche it could be like that.

When she sits in these meetings, they're boring.

They're really long and it's lots of people you don't know all the time.

So the point is all right, when you said that, that worked for me.

When you said that I had to go to the museum, I didn't like that.

So maybe she grunts, maybe she blinks twice or whatever it is, however she communicates.

So it is important for her to continue to be the leading actress in her life, because those are her choices and she has to live that life, no one else.

- As a parent of an African American female child, not only is it about access, it is about cultural bias.

Even at the onset of her being diagnosed, the doctor in this area who diagnosed her said well, she's autistic and have a nice life.

He gave me this number.

I went to my car and cried and tried to call the support number and the number was disconnected, so I kind of said within myself, this is gonna be me.

I'm gonna have to do this.

We're gonna have to do this together and we can't count on anyone else to be able to do that for us.

- [Teacher] Really good.

So you start, I'll play the chords.

(piano music) - When she was about four, I had bought for her a tiny piano.

It was a toy piano.

I heard her playing Happy Birthday.

I just listened to see if she really had done it.

It was a song playing on TV, and she was just replicating what she heard on TV.

And so I was amazed.

It opened up me to the possibility that even though she had been given that diagnosis, there was much more to her than what we had originally thought.

There was someone inside of Marsche who was gifted.

- Yay.

- Nice job.

That was a good break.

- Good afternoon.

My name is Lawana Jones.

I am the Founder and Executive Director of the Autism Council of Rochester, I want to say probably 22 years.

I've been training law enforcement, first responders, police.

I'm gonna show you a picture of my kid.

She is somewhat verbal, pretty much nonverbal.

If you were to meet her, she's gonna say yes to everything.

So if you say, did you commit a crime?

She's gonna say yes.

Did you kill somebody?

She's gonna say yes.

That's her response.

So the trajectory for a child who has autism, especially if they're African American or a child of color, is not very good.

The advocacy work that I do really is being the resource in our community that I didn't have when my daughter was first diagnosed and even as she ages now.

As I look back on Marsche's life, understanding that as an adult, Marsche is of a good size and when she gets upset she starts moving around, and for someone who doesn't know much about autism or doesn't know how to interact with them, it could have a really bad outcome for her.

And so that's pretty much, that's why I do what I do, especially when I get calls from law enforcement.

So the biggest issue in our community is not that we don't have a lot of services.

I've heard people say we've got a plethora of services in our community.

We do, but there's a lot of folks in our community who are not connected to services for whatever reason.

They don't know what they don't know.

So I'll leave my contact information.

Feel free to reach out to me directly.

- A nice, deep breath.

- [Lawana] I think as a community, we can do a better job of ensuring that our families of color, African American, Latina, Latino, Latinx, Indigenous, that we have done our best to make sure that they have the same equal access to services in our community for their adult children with disabilities.

And that's important to me because I didn't have that.

Since George Floyd, I think people are more open to it.

I just want to make sure that we continue to work on that to make sure that everyone has equitable access and inclusion when it comes to services for our adults with disabilities.

- Being disabled and being of color, you're automatically made twice as invisible.

So if you're invisible as a white person who's disabled, you're twice as invisible as a person of color who is disabled because the access that you have is very much so closed in.

So we're talking about white folks living in the ocean and black and brown folks living in a pond.

And so this is what happens.

Then no one wants to acknowledge that racism, enablism go hand in hand.

We see it in the schools and elementary school.

We see it in the schools and high school.

If you have an intellectual disability and then you get to go to college, we'll see it there, too.

So the fact of the matter is that the services are so needed, but you don't know that they exist because you don't know the people who are making those decisions and making the services work for them.

- Whoops, I slid.

- Stretch.

- Was that good?

- It was better, yes.

- My son's name is Peter and he's 36.

Peter has an intellectual disability and he is legally blind.

When I grew up in my neighborhood, we had a pond and I skated on the pond as a child.

I thought that my kids would also enjoy skating, and he just loved it right from the start.

Pete's very enthusiastic about Special Olympics.

He's very competitive, and it was great that we found out that they had a figure skating program because he loved figure skating.

We found him a personal coach to help guide him and teach him new skills so he could always be challenged and compete at his best level.

- My coach has been helping me a lot and it's been awesome, very supportive of me with all of my competition stuff.

I like being able to make friends when I'm in Special Olympics.

It's a lot of fun being able to meet people from all over the place.

I have friends from different parts of the state, and then we've met some people from all around the world from being in the world games.

The judges won't like.

- We're learning the importance of having higher expectations and giving people a chance to do what they want to do.

For example, people with intellectual disabilities are owning their own businesses, getting married, competing in sports, leading self-advocacy movements.

We are seeing that people are able to do a lot of things that we didn't expect a generation ago.

- He enjoys coming to work probably more so than any other employee that we have, and I love having him come to work.

It's just a matter of finding things that someone who can't see well can do.

I just tell him there's things you can do and some things you can't do.

We have a lot of people who can't climb trees, and that's one thing that he's not gonna be able to do.

- [Pete] I always wanted to do more full-time stuff with the landscape company and stuff.

It's always been my goal since I've been a little kid.

If I could pull it off, I would love to be able to start having a higher role in the company.

That would be like a dream come true if I could possibly pull it off.

- Pete actually needs support in a lot of ways, but we try not to make too big a deal of it because we want him to feel he's being independent.

I think independence is very important to Peter because he sees his siblings as very independent and he can't do some of the things that they can do and he wishes he could.

We have talked about guardianship through the years and we've looked into how to go about becoming Peter's guardians, but we've gotten such resistance from Peter that we haven't really pushed it.

- Right now I'm my own guardian.

Right now my parents are thinking about wanting to do that.

I'm kind of torn about what that's going to do to me if they do go through with it.

I would really want to do more research on it before I would agree to anything like that.

- Oh.

- I know he's always thinking, so I know he's making choices and thoughts in his head, but we don't really talk about those hard subjects.

We don't really talk about having a girlfriend or having children, or we talk some about where he wants to live, 'cause we want to make sure he's happy at home, but we don't really say okay, well what happens to you after we're gone or really talk about some of those really hard issues.

I think we just, well, I'll speak for myself.

I don't like to think about those things too much, so I just will put that aside for now.

- No one wants to think about the future.

No one wants to think about a time when we're not gonna be here on this Earth and be with the people that we love, but the consequences for people with disabilities and the impact on their lives and the family are just so much greater, so it's so important to take the time when you can to think about the future and to plan.

- I think a longer life is gonna be a better life if a plan is in place.

Planning can encompass a lot of different things, everything from legal considerations to financial planning, to how to have a meaningful day to day.

I think that wherever you are in your journey, my advice would always be to just begin.

It's never gonna be perfect.

It's about getting started.

(soft music) - [Kim] I don't know where he got the idea that he could have these big dreams, but he definitely does.

I mean, who else would come up with this Christmas show without having a big dream?

- It is a huge project and it's 90% him.

There's an example where we go out and work together and we work hard at it, but he's telling me what to do.

That whole project is his desire, understanding, and I'm working for him.

- [Pete] I have singing trees.

I have arches that jump over the driveway and chase down the side of a driveway.

The best part of the show for me is seeing everybody be very happy when they come by and tell me how awesome it is.

- [Kim] I think that's what he's always working for, is to feel himself as valued and be valued by others.

He really takes pride in people telling him he's done a good job.

He loves people to appreciate him for who he is.

(soft music) - [Announcer] A Good Life is presented as part of Move to Include, a partnership between WXXI Rochester, New York and the Golisano Foundation, working in communities to promote awareness and inclusion for people with intellectual, developmental and physical disabilities.

For more information about this program, visit us online at movetoinclude.us.

(gentle tones)