Op-Ed: Preserve State’s Residential Habilitation Centers
By Kris Brott
I am the sister of developmentally disabled (dd) 63 year old twin brothers who reside at Rainier School. I also volunteer once per month there as a DJ and have a dance for any residents that can/would like to participate. Some of the comments on Rosette Royale’s story for the Olympia Newswire, “Parents, Elected Officials Seek Ways to Save Residential Care Facility”, deny some very important realities about the ongoing need for residential health centers (RHCs) in Washington state.
Michael T. Bailey, Chair of the Board of Disability Rights Oregon, writes that “People with disabilities are either people like the rest of us, deserving of a real life, or they are perpetual children forever in need of care. They are one of the other. They cannot be both.” But he fails to take into account the following:
Wide Range of DD Experience
There is a wide range of developmental disabilities, combined with a wide range of physical/medical issues, combined with a wide range of behavior issues amongst the dd population. Much of the population currently residing in the RHCs are amongst the most medically fragile, most prone to behavioral problems and have the highest level of mental disability. Someone like Angie, who is non-verbal, has seizures, has trouble with walking, has to have her food pureed and has the mental capacity of a 2 year old, is not able to dress herself without assistance, eat without assistance, etc. let alone take a bus, hold a job or get married.
Improved RHC Services
It is simply not the case that the “community is good” and the “RHCs are bad”. The RHCs have come a long way in the last 10 years or more in improving the living conditions of those who live there.
At Rainier School, residents are housed in smaller cottages, with staff that have long term experience working with dd people and provide a higher level of supervision than is often seen in the community settings. They have relationships, friends and family. My brothers like where they live because they are near enough to our family that we can participate in their lives, because they have known the staff there for years and consider them a second family and because they have friends amongst the other residents.
RHCs provide the most freedom, security and quality of life for a certain segment of the dd population. Residents of the Rainier School have a large campus that provides a more secure situation where those who are able are free to ride their bikes, walk around, go to the on-campus coffee shop, etc. There are job opportunities in the green house, the wood working shop, the laundry, etc. There are recreation opportunities (dances, parties, special events, etc. as well as a swimming pool – that was recently closed due to budget cuts). There is medical/dental care that is provided by people who are used to working with dd patients.
Parents’ Negative Experience With Alternatives to RHCs
While many dd people have successfully transitioned into community living (which I think is wonderful!), there are plenty of nightmare situations that have also occurred for a variety of reasons.
To say that parents of Rainier School residents do not have experience with community placement is simply not true– most of us have our own personal horror stories that we can relate about the times are loved ones were placed into the “community.”
Here are some of the experiences I’ve had:
1) Too much freedom/lack of supervision in an unsafe setting.
My brother (back in the 1980s when he was placed in the community) was arrested twice for assault. On one occasion, he bothered a woman who was coming out of a grocery store because he wanted one of her pops. This resulted in his arrest and placement into the general population of a jail for 3 weeks, with non-dd inmates who taunted/mistreated him. All you have to do is ask policemen what they have witnessed in regards to dd individuals being harmed (rape, assault, etc.) or harming others and being arrested and dealt with by police/medical personnel, etc. that don’t have experience in dealing with dd individuals to understand the downside to community placement of some individuals.
2) Abuse/neglect by caregivers.
Much is known of the past (and some present) cases of abuse in RHCs, but with much less oversight of community caregivers, not as much is known of how often this occurs in the community settings. I encourage people to take a closer look at the real life results of the closure of Fairview Training center in Oregon that Michael Bailey is so proud of (see the Oregonian’s “After Fairview” series). Also relevant is a recent Seattle Times series, “Seniors for Sale”, regarding abuse at group homes for the elderly.
3) Not enough medical support for those with medical disabilities.
My other brother was never placed in the community because at the time, he was already needing insulin shots for his diabetes. They tried for a year to find a suitable place, but then gave up. Or take Angie for instance, who is has problems with seizures. Her father had her living in a community setting until they told him that they could no longer care for her medically. He fought to get her back into Rainier School and he is now helping to lead the fight to keep it open.
Why We Still Need the Rainier School and Other RHCs
From a moral perspective, I come to the opposite conclusion that some of the above comment makers come to. I think it is immoral to pretend that equal or better care is currently available in this state for much of the high needs population at the RHCs. The reality of closing these types of facilities (or just moving dd people around a lot) has been mental/emotional trauma, as well as untimely deaths (one of our legislators, at a community forum, said that the death rate increased 67% in California following the closure of its RHC type facilities). I believe that real people whose lives have real value will be harmed if these facilities are closed. That is why we, as family members are fighting to keep them open.
From a cost perspective, we do not believe that the state will save money at all. Individuals who are high cost living in an RHC will be high cost in a community setting. Capacity does not exist to support the movement of 900 people into the community. SOLAs and other facilities will have to be created. The studies done in the past do not take into consideration the costs in the areas of transportation, medical care, etc due to the increased use of 911, ambulances, police personnel, fire personnel, hospital/medical personnel etc since these costs are absorbed by other areas of the state budget and not out of the DSHS budget.
Those of us who support the continued use of the RHCs would like to heal the divide amongst the dd community. We would like to see this state make real reform that can benefit everyone. We think that the RHCs can be used to increase the level of services for everyone. They should be opened up to more respite/emergency/transitional beds (a desperate need for families whose dd loved ones live at home with them). They should have their medical and dental clinics open to all of the dd population (another desperate need – many medical/dental people do not have experience or the desire to accommodate dd individuals). This would also be an income source for the state to help offset costs.
Other services, such as the pool at Rainier could be opened up to the community or to the dd population as a whole as a great source for recreation as well as physical rehabilitation (as well as another income source to help offset costs). Relationships with organizations such as the UW medical college, could be re-established to provide future training for medical/dental caregivers. RHCs could also be excellent places to provide more training for caregivers as well as training/learning for dd individuals.
The RHCs of today are not the RHCs of the past. Let’s move forward with reform that will benefit the dd population as a whole, while not sacrificing the quality of life for any of these real, valuable people.
