HRSA/MCHB 2005 FEDERAL/STATE PARTNERSHIP MEETING

PUBLIC HEALTH ACROSS THE LIFESPAN

Cross-Cutting Issues in Transition

PATRICIA THOMAS: Well, good morning. I am Trish Thomas. I'm from the Pueblo of Laguna in New Mexico, and I do work with our newly funded National Center on Parent Professional Partnerships and Family Voices. And I'm going to tell you about my son.

This is my son when he was born. And this is my son now. We've always lived on the Laguna Indian Reservation, so it was a ‑‑ it was quite different because we have two additional layers to deal with other than normal people in working with service providers, hospitals, everything. We worked with the state, we worked with tribal programs, we worked with federal programs, we worked with private health insurance. So it was looking at coordinating all those.

And because I do come and have a ‑‑ our cultural and traditions are very engrained into our every day lives, we have ‑‑ I come from a matrionic society, so the women say and control everything and own everything. Which is great.

But it's also our role, as a matriarch, to take care of our children. And so that was my roll. I literally set up all the appointments for my son, I did all the case management. Because at any one point in time he could have ‑‑ I think the most he had was 12 case managers, and I assumed they were all, you know, talking and sharing information. And, of course, they weren't, because we'd go to one appointment and then we'd get a call and they'd say, "You were supposed to be here ten minutes ago." And I was like, "Oh, my God. " Anyway, so I took on that role, but Travis went with me all the time. He went to every meeting,
every ‑‑ anything that involved Travis, he was there. And his sister was also there.

So they learned a lot about the transition process and what they had to do. He was totally involved forever. He's never not gone to any of his meetings, had input. And because my son is deaf and has a vision impairment and a metabolic disorder, mostly because he's deaf, it was really hard for the service providers to really look and really engage him. They were always talking to me, which was culturally appropriate because I was the matriarch and I was handling that. I had to kind of speak with our other, his other grandmothers, who were also the matriarchs, so that they totally understood why I needed kind of transition him into making some of those decisions for himself.

Once I told them the benefits, of the life benefits of him taking control of his own life and making those decisions, it was not a problem at all. They were very open.

One of the things they did have to do with us meeting with them was we weren't an ordinary like two‑parent group. When you went in to talk with a doctor, we had ‑‑ half the tribe went in with us. So the consultation room had to accommodate all of us.

And it was a real learning experience for all the providers because the first time we were all trying to squeeze into a little maybe three‑by‑three consultation room, and they had to open the door, and then finally they decided they needed to use a bigger conference room for us because everybody needed to hear and see what was happening with him.

As I said, Travis, it was really important that he started going, started making, learning about his special needs, what they were, because sometimes they changed a lot. He was in and out of the hospital a lot during his life. He had a total of 13 surgeries on his eye. He had two lens and corneal implants. The first one didn't take, so he had to go back and have another one.

And within our culture that was something that took a lot of planning and making sure it happened because, again, that's a body part, a sense, and we believe we had to do our traditional healing in order to make that happen, so we believe that everybody has an essence still within them. So the very traditional family members, we had to do a ceremony in order for that to happen.

And when I decided initially just to go and do it, the first one, I didn't tell anybody because I knew it was going to ‑‑ I was trying to find a balance between the western world and my world. And then it didn't take, it got infected, so it was like, see? We didn't do our stuff and that's what happens. I was like, okay. So we went back, we did it, it work. So we moved on.

And it is ‑‑ it was really hard for them to ‑‑ because most of the physicians and service providers were all male, and so when ‑‑ they weren't used to dealing with all us women, all us grandmothers. We would be all the ones there, and they would be, you know ‑‑ sometimes it made them a little uncomfortable because they all ask questions. And then they needed further clarification because the terminology they were using were way above their heads. Like when they told him that he was going to have an AL keratoplasty they were like, they're gonna plaster him? I don't understand that. Again, so it was bringing them and getting them to understand that they needed to kind of make some changes in the terminology they were using and how they addressed us.

At one point in time one of the physicians came in and he kind of, you know, stood above everybody. And in our cultural, it's ‑‑ when you sit down, then that's when the talk starts. So he kept standing, and it was like somebody was trying to, well, what do we do? You know, hello. Everybody kept saying hello, and he kept waiting and then talking. So we had ‑‑ Travis's dad was there, so he stood up and sat down, trying to give him a clue that we wanted him to sit down, and he just kept talking. So all of us stood up, you know, and sat down, and we were trying to veer him over this way finally. He didn't get it, so we had to walk over and just kind of ask him to sit down.

So it was kind of funny, and it was a total learning experience on both sides about how he had to learn about the culture and dealing with the large amount of people that came into the room.

And so a lot of the times we didn't make ‑‑ we included Travis in helping him understand what they were saying and to make sure that he knew how that impacted him holistically all the way down, as well as with us. And so our consultations took more than 15 minutes, and so they got to know that when we came in, they had to plan a little bit more time for us.

We really had to educate everybody all the way down the line, starting from early intervention again. And I think I had the easiest time with early intervention. They really totally understood. And with Title V, they were great! Our Title V worker was very attuned to our cultural differences. And if she wasn't understanding it, she would come over and ask me, and that's ‑‑ a lot of the times what people didn't do was just ask us. You know, we never got asked "Is this appropriate?" Or, you know, why ‑‑ what we were doing or they were doing, you know, did it matter. And so she really set the tone for the other providers because, again, you know, when you went in to see ‑‑ when he went in to see the Title V providers, they all provided him a service. At one time you saw the pediatrician, the dentist where they went ‑‑ you know, you just went around and did everybody.

So it was really ‑‑ they were ‑‑ she was very attuned to kind of our needs at that point in time and really understood that there were cultural differences, they were important to us, and she needed to find out more.

This is him now. Also, during this time period what was really important was that we identified what I will call a cultural broker, cultural liaison, so that they knew the community, they knew us. We provided them ‑‑ they provided the provider's information, like when not to come to provide early intervention service, because we had closed village, and closed village, literally, is closed. You don't come in, you don't come out; it is closed. So if you had ‑‑ sometimes his therapies were set, and if they didn't call ahead, you know, you have these tribal men at the front of the village, and they just turn you around and you have to leave.

And so they learned that they had to look at what I call our Indian Calendar to make sure that they knew when events were taking place, that the whole village is involved in. And, literally, it took ‑‑ the whole village raised my son. They don't look at it as special need or disability in the terms that the general public does. They're allowed to participate in whatever they can to the level that they can. And he was always participating in all our traditions and culture. They allowed that to happen, again, to the level that he was able to do that.

He chose to participate in certain things, and other things he chose, you know, not to. But he was involved at ‑‑ and being there to take part so that he is ‑‑ he knows his culture, he knows his traditions. Travis decided ‑‑ he's actually now the cultural broker for other young adults in our community. They contact him. And he's also kind of the liaison for other deaf students.

Travis, because I was very young and naive, he could speak. I put him into an auditory verbal program. He learned to lip read and sign, and so he does all three. So within his own deaf community and other students, he is that bridge because he can do all three. And so now he's ‑‑ he does a lot. He does his own public speaking, he handles all his health care. And we have a really nice system set up so that ‑‑ we have a device that we use because sometimes, again, he doesn't understand the terminology. And so on our device, he has two TTY systems so that I can be here and he can be in the doctor's office and testing me, and the doctor and him are on the other line, and so we can ‑‑ we're in constant communication. If he doesn't know what the terms are or what they want to do or if that's an appropriate time, because with our Indian calendar it's not like December 25th, that's the day, it's like it floats between ‑‑ it could be two weeks with us when our village is going to be closed. So he contacts me because, again, I'm the matriarch, and they let us know everything in our village about when those times are going to be closed.

So I'm open to you also e‑mailing me and asking me any questions if you have any. Thank you, I appreciate your time.