THE situation is even worse than we feared. People who advocate for the rights and needs of state residents with developmental disabilities have long had a growing sense of foreboding about the state's service-delivery system. The recent Seattle Times series "Throwaway People" has confirmed that sense. The articles paint a bleak picture of a system that has failed one of the most vulnerable and politically powerless segments of our society, even as demand for those services mounts.
Those of us trying to work with this system read the series with a combination of gratitude and horror. Gratitude that the plight of these people has finally seen the light of day and we have an opportunity to call for changes in the system. Our sense of horror stemmed from the realization that there is more suffering than even we imagined.
Our essential position is simple: People with developmental disabilities have the same right to basic support as anyone else in society. We're not talking about the right to drive in the fast lane, or to own a house on a hill. We're talking about the most basic human rights of all: the right to feel safe in our own home, the right to regular meals, the right to feel like a contributing member of society.
Most people take those things for granted because they can provide for themselves. But thousands of state residents are physically or mentally incapable of providing those things for themselves and are therefore dependent on the state for basic support. We have a legal and moral obligation to provide for the most vulnerable segments of our society.
The Times series vividly dramatized a flawed system. The endemic problems in the system are what drove us to call on the governor for a review of the placements of people with developmental disabilities in adult family, boarding and group homes. Those problems include inadequate staff training and compensation, no means of gauging the appropriateness of care, little oversight of such facilities and no way to bar or punish those who abuse or take advantage of people with developmental disabilities.
The Times series' recommendations focused on the latter point. While we heartily concur those changes need to be made, there are other, equally pressing needs. Those needs were outlined in a letter we recently sent to Gov. Gary Locke, Attorney General Christine Gregoire and state legislators. If these needs are addressed, many cases of evaded punishment and accountability will become moot.
As always, prevention of abuses and neglect - through adequate funding and training - will be more cost-effective and serve the interests of these vulnerable people by preempting many of the situations highlighted in The Times' series.
What we have requested of the governor, the Legislature and the attorney general is as follows:
Change state laws to allow the family or relatives of individuals with developmental disabilities to take civil action in cases of wrongful deaths, to make hearsay evidence admissible in cases involving abuse and neglect of people with developmental disabilities, and to create statutory authority to prosecute third-degree mistreatment.
Dramatically improve client-to-case-manager ratios in the developmental-disabilities system. That ratio currently stands at 200 clients to one case manager - the worst ratio in the entire country.
Require annual certification of all providers who receive contracts from the Division of Developmental Disabilities, Department of Social and Health Services.
Establish pre-service training standards and ongoing education requirements for direct-care providers.
Increase provider wages. When care providers receive minimum wage, turnover is rampant and constant. It is hard to attract and keep qualified providers who are expected to attend to people with the most-intimate of human needs.
Create and fund a developmental-disabilities ombudsman program with the authority to require enforcement action in cases of abuse, neglect, exploitation and danger.
Create registries so that people and families can easily find trained and qualified providers who have not been convicted of abuse, neglect or exploitation.
The Times' conclusions promoted the first and last of these points, but the others are no less important.
What we are saying, in stark terms, is that every member of this segment of our populace has the right not to be beaten, abused or neglected by people paid with state money to care for them. The only way to ensure that basic right is to provide caregivers training and adequate compensation; state regulators the authority to ensure quality supports and services; and to call to account people who abuse the system and the people within it.
And if you believe this issue deals with a segment of society you don't know, don't care about or to which you will never belong, consider this. Most of us were born in hospitals and cared for by doctors and nurses paid to perform those jobs. Virtually all of us attended schools, public and private, with teachers paid to look after us for five to six hours a day. And in the twilight of our years, we may well find ourselves looked after by people in a setting very much like one described in The Times' series. If you weren't or aren't yet a member of a vulnerable segment of society, consider yourself fortunate indeed. You may well yet find yourself there. This issue affects all of us, regardless of where we stand.
Ed Holen is the executive director of the Developmental Disabilities Council of Washington. Sue Elliott is the executive director of the Arc of Washington State, an advocacy group for state residents with developmental disabilities. .