Parents Brace For Change In The Lives Of Their Disabled Children (Transcript) | WAMU 88.5 - American University Radio

Transcripts

Parents Brace For Change In The Lives Of Their Disabled Children

MR. SABRI BEN-ACHOUR

00:00:08
Welcome back to "Metro Connection." I'm Sabri Ben-Achour in today for Rebecca Sheir and today we're looking at stress, from the extreme stress of trying to survive without a home to the stress of working two or even three jobs to support your family to the stress of being a parent. It's this final kind of stress we focus on now as we head to the Northern Virginia training center in Fairfax. The open spaces, the chattering TV and the bustle of staff give the impression of a cross between a college dorm and a hospital. It's the place Jason Kinzler calls home.

MR. PETER KINZLER

00:00:44
Hey, Jase.

BEN-ACHOUR

00:00:45
Above his bed, there's a big blue button with a picture of his parents on it.

KINZLER

00:00:49
Do you want to push this? He can do this. Jase...

KINZLER

00:00:57
Who's that?

BEN-ACHOUR

00:01:01
Jason's piercing blue-gray eyes show no sign that he recognizes his parents. He has something called Angelman's Syndrome. He can walk, but can't talk and at 36 years old, functions at about the level of a six-month-old. Today, Jason's father, Peter Kinzler, has come to pay him a visit.

KINZLER

00:01:20
Yeah, you want to go someplace, don't you? Do you want (unintelligible) ?

BEN-ACHOUR

00:01:23
Kinzler helps his son up by lifting his harness-like belt and Jason leads everyone down the hall, trudging in large black orthopedic shoes individually tailored for each foot.

MS. KATIE EGAN

00:01:35
Hi, buddy, do you know what you usually do when you get here? You can do it. You can do it. You have to turn around, though. There you go. It's snuggle time.

BEN-ACHOUR

00:01:45
Katie Egan is Jason's speech pathologist.

EGAN

00:01:48
So this is one of his routines that he'll come and say hi and Jason loves some physical contact so he gets a back rub.

BEN-ACHOUR

00:01:55
This is one of Virginia's five training centers for developmentally disabled residents. In the past, it would've been called an institution. There's a dentist here and a doctor on call, there's a nature trail, a therapeutic swimming pool. Some residents have jobs at the vocational center, recycling or making crafts. But all of this will go away within three years as Virginia implements a settlement with the Department of Justice.

BEN-ACHOUR

00:02:19
The idea is to take people out of institutions like this and put them in community-based settings where some might have more freedom and be socialized into mainstream society. That could mean living in their own home, group homes or at home with live in staff. Jim Stewart is commission for the Department of Behavioral Health and Developmental Services.

MR. JIM STEWART

00:02:37
It will be necessary for us to close the training centers so that the resources that are currently being used in the facility can be shifted to the community.

BEN-ACHOUR

00:02:47
And this has parents, some of them senior citizens, worry their children won't get the same level of care as they do now.

MS. PAT BENNETT

00:02:54
Absolutely not. I got tired of people telling me how great the community was.

BEN-ACHOUR

00:02:59
Pat Bennett's daughter, Jenny, is 45 years old and quadriplegic.

BENNETT

00:03:03
The term reckless endangerment, for my daughter, is what comes to mind when I visit those homes.

BEN-ACHOUR

00:03:09
But a 20-minute drive down the road offers a different perspective.

MS. KATHY MAY

00:03:12
I think that there's been a lot of anxiety from the training center families around this and I certainly understand their fear. But I've been living with that feeling for 22 years because I haven't had any services.

BEN-ACHOUR

00:03:29
Kathy May is a mother in Fairfax, Va. Her 22-year-old son, Sam, has Fragile X Syndrome, an intellectual disability. Sam has just finished exercising and is now watching The Muppets downstairs. How's it going?

MAY

00:03:41
Sam, just say hi.

MR. SAM MAY

00:03:42
Hello.

MAY

00:03:42
Can you tell Sabri what you did for lunch today, what was so exciting?

MAY

00:03:46
Jerry.

MAY

00:03:46
You went to Jerry's?

BEN-ACHOUR

00:03:48
Oh, cool. Sam May is among the 6,000 people in Virginia on waiting lists to get some kind of placement or long term care in an independent living facility in the community. As part of Virginia's settlement, the Commonwealth will create around 4,200 new such placement slots. Kathy May says this is long overdue for her family.

MAY

00:04:06
I cannot say to my husband, it's our 25th wedding anniversary, let's just go away for the weekend. I've never -- we can't do that. We need to start thinking about, okay, so how are we going to afford our retirement? What have we given up all these years taking care of Sam? And it's really been my career that's taken a backseat to caring for Sam over the years. So we don’t maybe have as much money saved as some other family might.

BEN-ACHOUR

00:04:29
But the primary concern for those with family members in training centers remains the health and safety of their adult children who live there. Jamie Liban says they shouldn't worry.

MS. JAMIE LIBAN

00:04:39
Currently in Virginia, there are literally thousands of people who have significant medical and behavioral disabilities who are living in the community.

BEN-ACHOUR

00:04:47
Liban is the executive director of the Arc of Virginia, an advocacy organization for people with developmental disabilities and their families. She says Medicaid pays for a range of services.

LIBAN

00:04:57
Things like residential supports, day support, support employment, respite, nursing, basically anything that somebody with an intellectual or developmental disability, any type of service that they would need in order to avoid institutionalization. And that includes the people with the most complex disabilities.

BEN-ACHOUR

00:05:15
Liban says the settlement prohibits anyone from leaving an institution until they found a place that can offer them comparable care. She says crisis services and supplemental help would be increased as well.

LIBAN

00:05:25
This agreement will only enhance what's available.

BEN-ACHOUR

00:05:29
But right now, right this second, those enhancements haven't been made yet. Back at the Northern Virginia Training Center, speech pathologist, Katie Egan says there are a lot of services that are still not available in a community based setting.

EGAN

00:05:41
I have five phone calls to return today about people that are looking for speech services in the community and they can't find them.

BEN-ACHOUR

00:05:46
For those people waiting on a return phone call and for the thousands of other parents worried about the futures of their disabled adult children, pondering the future can be an exercise in significant stress. I'm Sabri Ben-Achour.

BEN-ACHOUR

00:06:12
We learned about this story through WAMU's Public Insight Network. It's a way for people in the community to share their experiences with us and a way for us to reach out for help when we're working on upcoming stories. To join the Public Insight Network or learn more about how it works, head over to wamu.org/PIN.
Transcripts of WAMU programs are available for personal use. Transcripts are provided "As Is" without warranties of any kind, either express or implied. WAMU does not warrant that the transcript is error-free. For all WAMU programs, the broadcast audio should be considered the authoritative version. Transcripts are owned by WAMU 88.5 FM American University Radio and are protected by laws in both the United States and international law. You may not sell or modify transcripts or reproduce, display, distribute, or otherwise use the transcript, in whole or in part, in any way for any public or commercial purpose without the express written permission of WAMU. All requests for uses beyond personal and noncommercial use should be referred to (202) 885-1200.