Shifting Patterns Part 2

Produced in 1992 (Run time 16:47)

Narrator: Shifting Patterns, a change in beliefs and attitudes among individuals, families, and our communities. These programs help people gain the skills, the knowledge, and the allies they will need, enabling them to take control of their lives.

The Voucher Program gives family direct access to the money and authority to buy the things they want and they need.

Mark Reeves: It was rough. It is very difficult to get any consistent respite care for Robbie. We had different agencies that would come in sometimes and the turnover rate was tremendous and a lot of times they'd come and they'd say, "Oh, I can't lift anybody. I have a bad back."

Paula Reeves: They didn't know anything about what was required for his care. It was like nobody had told them anything, how old he was or what his needs were.

Mark Reeves: And if we had a meeting to go to or something, they'd come and they'd say, "Well, I can't take care of him," and they'd have to leave. Well, this is an hour before you had to be at the meeting. It was a lot of scrambling around a lot of time.

Paula Reeves: Well, actually, we met Jack through one of the agencies we hired. He was the first dependable person we had that enjoyed Robbie and would take him to his home and all that. And so when Jack had thought about leaving that agency, if we hadn't of had the Voucher Program, we would have lost him and been back to square one.

So because we went on the Voucher Program, we could then hire Jack ourselves and we could keep him. And he's been working with Robbie for about three years now, I'd say. Plus, we've got a friend, a family friend that we hire to come into the home. She just works here. Jack takes him, usually, to his place. So it's been wonderful. We get just about… We get probably three times more respite than we got before, wouldn't you say?

Mark Reeves: Oh, yeah. And it's real flexible. We can find out a week or two in advance if one of them can take him on a particular day when we have a meeting or something to go to, and usually one of them will be able to do it, nine out of ten times.

Waliya Flowers: There we go. There we go. Good girl. Okay. Now why don't you sit on the bike while mommy pulls the stand up. Sit right there. This is the bike that the Voucher Program bought. Hold on. Go, go, go! Good girl. Come on, can't rest. How do you get muscles, hmm? Do we smile as we get muscles, huh? Like Jane Fonda. Oh, boy.

The Voucher Program has really brightened up our lives in many ways because as Babe's disease progresses, the doctors are saying to me there's very little we can do, but that's not what I believe.

I believe there are things that can be done in conjunction with what the doctors are giving her – the meds and the physical therapy and the occupational therapy. So what I have done is taken a holistic viewpoint in feeding her and putting her on a very strict vitamin regime and making sure she gets lots of exercise every day. And when the weather permits, lots of fresh air, too.

And certain treats for us is like going to Children's Theater, which is one of Babe's favorite places to go. It's different. It's a lot different than having an agency or a social worker tell you you have to do this or your child needs this or we need a doctor's recommendation in order to say that your child needs to take vitamin C. It allows the parents to be more in control and have a choice. It allows you to maintain your self-respect.

Ann Esparza: This is going to be a cement sidewalk going down to the backyard. Rachel has no access to the backyard right now, so we're using voucher funds to put this sidewalk in so she can get in the back and play with all her friends.

On the front door, we used voucher funds to put in an automatic door closer and this dog grate, which protects Rachel from pushing out the screen but she can also grab it to pull the door shut. Rachel's room was designed bigger so that she could have more than one wheelchair in here, have lots of friends in to play. We used voucher funds to purchase an automatic light switch. When Rachel comes into the room, this switch can be set to motion or sound or both, and the light will come on and stay on for up to three or four minutes, providing there is some sort of movement in the room. We have rocker switches so that Rachel can turn on and off the light switches.

We used a lot of voucher money to do this computer setup. When we first moved in, we had the computer on a little metal table, and it wasn't appropriate for what Rachel needed for workspace and it was real frustrating. Books and computer programs were on the floor. There was no room for a printer. So now Rachel has this.

Narrator: Partners in Policymaking is an intensive course that teaches individuals and family members to be community leaders. They use their new skills to obtain better services and influence public policy.

Sue Swenson: One thing I've learned that's most important from Partners, I think, for me is that like that teacher who first handed me the application form, slipped it to me, basically. There are a lot of people in the system who really want to do the right thing, but unless they have a parent who will stand up next to them and say, "Here's what I want. Here's why I want it. Here's how I want you to do it," it's very hard for them to accomplish any change without parents who will stand next to them.

Narrator: Those parents come from Partners, a leadership program to teach what's possible and how to get it.

Sue Swenson: It was a mind changing process for me. And we always knew we wanted Charlie to live at home, but I thought that meant that I couldn't work and that, you know, basically he would have to be gone all day and I would have to be home all day taking care of Charlie, and that Charlie really wouldn't, oh, would never be able to have any independence and that we would have to make all of his choices for him.

That's where I was when I started Partners, and in the process of nine months, eight weekends of listening to these experts, really having a face-to-face conversation with people, you begin to understand that your job isn't to make all the choices for the kid. Your job is to help read the choices that he is making. Your job is to translate what he does want and put him in the driver's seat.

Linda Rother: Partners in Policymaking makes you feel like you're someone. It brings your self-respect up. You learn about yourself and your feelings and your values, and you can share those with other people that are also learning about themselves.

But yet you go beyond that. You get what I call the gurus of the disability field to talk to and to bounce ideas off of and to learn from and to see where their mistakes were made and then you can go in a different direction. It makes you feel humble, but yet it gives you power to make a change, make a difference in the world or in your own world. Learned a whole lot, met a whole lot of other parents that were basically in the same type of boat that I was.

And from there, I decided that I needed more and went back to school to get my master's in public administration. And from there, I've been on national committees, state committees, county committees, school district committee, and have really gotten involved for kids and people with disabilities.

I have now decided that I want to run for the House of Representatives for this district, so I've been endorsed and my campaign has started. And that's where it's brought me to.

Paul Odland: The unique thing about that was that I brought in my experiences of having a son with deaf/blindness, but each person was bringing in their own experiences so that unique sharing of each and everyone's struggles, unique challenges.

Now I could take in more experiences of other people. I could share that with, for instance, in my dental practice. When I'm talking with people within my dental practice and I first may ask how are you doing, and what are doing, and what's been happening, and I've shared with them my situation with my son oftentimes. Not always.

You certainly don't want to push anything upon anybody. I was also not only sharing deaf/blindness, I was talking about other issues. So that was unique.

Sue Swenson: The first session didn't really help because I learned so much in the first session. What I really learned was that there was a movement going on to change the laws of all people with disabilities. And that in going to the Partners sessions, I wasn't just going to learn some little techniques of how to handle my life with Charlie. And I wasn't just going to learn access to the systems that would support what we want to do as a family and what's good for our kids, although that's part of what I learned.

But I was also going to learn basically what are my responsibilities to society. What are my responsibilities as someone who knows and loves a person with a disability and can think about what should his place in society be?

You go through Partners and you come out thinking, no, we have to change the world. And, at the first session that's pretty scary. But I've been to Washington now three times. I mean I'm not changing the world, but I'm doing my part, and that really means something. To me, it really means something. I think to Charlie it really means something.

Narrator: Youth Leadership programs demonstrate that youth with disabilities can be leaders too. The friendships they make now can change the nature of community life for generations to come.

Kathy Truax: The young people came away with realizing that a young person with a disability should be treated just like they want to be treated. I think that was probably the primary thing that I heard the most from the kids without disabilities, the thing that they learned.

The young people with disabilities did a lot of modeling. I saw a lot of modeling going on. And they also did some things that they probably never, ever, ever thought that they would do, like climbing a tower. Young Eric taking the step and then saying he would never take another step and then taking a second step and that's it, I'm coming down, and taking a third step.

Those kinds of learnings, those stories, if you will, are the success of the Service Treks.

Child #1: Action.

Child #2: You wanna go?

Children: Sure. Camp, camp, camp, camp, camp is hopping.

Child #3: The best thing is you get to meet new friends with different abilities.

Children: Camp, camp, camp, camp, camp is hopping. It's cool.

Narrator: Along with the friendships, the teamwork, and the good times, the young people find the personal satisfaction of helping the community.

Child #4: Shawnna, put it down. You're working hard [Inaudible]. Can you carry it over to a tree that you see that doesn't have any, okay? Can you carry that?

Shawnna: Yeah.

Child #4: Okay.

Narrator: The young people work together at a park, at a farm, or a community setting finding new opportunities for cooperation and seeing their hard work benefit others.

Kathy Truax: Kids, when they leave any kind of camping experience, whether it was Service Treks or going up to the Boundary Waters or just being with friends for a long period of time, leave with that I'll never see you again sort of mentality and I'm really going to miss you and crying.

A lot of kids were crying at the end. There was some excitement at trying some new things. Canoeing, that's always a big one for them. And all the ropes kinds of things that they experienced. And making some new friends.

Child #5: We really had one person that brought this group together and made us laugh and made us push forward and always leading the pack, it was Stacy. And it was a pleasure to have her in my group and I get to work with them this summer also. Oh, Stacy caught the largest fish today, the largest carp at the Carp Festival in Coon Rapids.

Narrator: Parents as Case Managers helps parents, rather than professionals, to be the case managers for their sons and daughters with developmental disabilities.

Diane Roth: I think that parent case management gave me… It gave power back to our family, and it gave control back to our family, and it gave a sense of stability back to our family when things were constantly being topsy-turvied by Amy's illness. And I think it gave me self-assuredness back that maybe I really can, even though I'm just this little parent, that maybe I really can do some things to change the things that I don't like.

Paul Roth: Just to be able to spend some time with each other. I think since Amy was born we've gone away by ourselves once or twice. And actually being able to do that, to get away a couple of times has been because of Diane being involved with the parent case management thing and being able to get some services.

Diane Roth: For example, I'd have to stay home with Amy and Paul would be going with Trevor and it really split up the family and it really causes a lot of problems with your bonding with your family because you can't do things as a whole. And being able to get the nursing services that we were finally able to get really helped us because now we can go places as a family more than we did before.

The professionals really need to understand that they need to offer the services to the family but let the family pick and choose what they need and what works well in their family instead of just saying, "Well, here's, you know, we have this and this and this, and I think you should go over here."

I think the choice needs to be the family has to decide what will work best for them. I think when you have a child with special needs and you love them so much and you see, you know, you love your family and you see what all this is impacting on your family, and then all of a sudden you get involved with parent case management.

And each time we have a success, it builds your confidence to go on and try bigger and better things.