Speaking out for People with
 Intellectual and Developmental Disabilities

Mother sees compassionate care at Glenwood

by Sybil Finken, VOR First Vice President
August 2, 2008
Des Moines Register

I am the mother of four children.

Son Zach lives near Chicago where he is the Executive News Editor of the Chicago Sun Times. Son Luke lives in Colorado where, following in his parents' footsteps, he is an educator.

My youngest, Carmen, will be a junior in high school this fall. She is an honor student, involved in many school and community activities. Carmen is well poised for a very bright future.

Son Seth’s achievements are also remarkable. We’ve nurtured Seth and continue to provide all we can to ensure his continued happiness. Seth is severely disabled. He suffered meningitis when he was 7 months old. Seth is deaf, blind, has profound mental retardation, is wheelchair bound, and has a seizure disorder. His home is Glenwood Resource Center (GRC.)

No one ever questions our decisions on behalf of Zach, Luke and Carmen. My husband Russ and I are not shy about taking some credit for the amazing people they have become. Yet, we are increasingly challenged about our care choices for Seth, especially in light of recent news stories about care at Glenwood.

As a longtime national disability advocate, I'm familiar with the question of whether institutions such as GRC are ever appropriate. I frequently talk with parents and advocates for the disabled in other states. And they have told me about the terrible problems their loved ones face when facilities like GRC are closed: long wait lists and seriously compromised care in community settings. I have responded that Iowans are sensible people. We know that a range of options is necessary. GRC isn't for every disabled person. A person with mild mental retardation who can take the bus to his/her job at HyVee can thrive and be happy in a community setting. But Seth will never be like that. GRC is the only place for him.

Common sense, however, doesn’t always carry the day and the concerns I have heard from families in other states are suddenly very close to home.

Advocates who trumpet the “one size fits all” approach to disability services seem uncomfortably delighted by recent headlines which call into question the quality of care at GRC. These advocates are saying “I told you so” and calling for the closure of Glenwood and (for good measure) Woodward Resource Center, Iowa’s other specialized mental retardation facility. These advocates – some of whom have never met me, Seth or visited Glenwood – are also saying, indirectly, “I am a bad mom.”

Yes, I am offended.

The headlines are scary and alarming, and families have responded. We are the first in line to raise concern, get the full story and call for improvements. Families are not blindly supportive of Glenwood Resource Center. The protective reflex in parents is like none other; it is only magnified when your loved one is basically helpless and at the mercy of caregivers.

We support Glenwood Resource Center because we know Seth receives compassionate, state of the art care by people who have worked with him for years. We visit Seth regularly, dropping in unannounced. If Seth were being harmed, we’d know it.

So what is the full story? Much of the concern relates to paperwork, process and documentation. If, indeed, there are needed changes to policies and procedures, then, yes, those changes must be made. The state and federal oversight of Glenwood – as opposed to the basically nonexistent oversight of scattered community homes - gives parents like me so much comfort. When people like my son are forced from a place where their superlative treatment is examined with microscopic intensity to a "free" environment in the "mainstream" community, they are too often ignored and the quality of their lives depreciates beyond belief. These failings don't often make front-page headlines. But they are all too real.

We call on Glenwood’s administration and state officials to improve its documentation and reporting, recognizing this can only offer a degree of protection not available anywhere else. Meanwhile, visit Glenwood Resource Center for yourself. I think you will agree that the lack of paperwork is not worth closing a remarkably compassionate home for Iowa’s most vulnerable citizens.