by Paul Edwards
Over the past year or two I have been involved in a number of situations that involve the relationship of blind people to state agencies who serve them! One of the issues that always seems to come up is how far we as consumers should go in opposing what agencies do. I have been told by people both inside and outside agencies that we must be careful lest our criticisms fuel efforts to replace separate agencies with generic models.
Obviously, there is some validity to this argument. If our charges are wildly irresponsible or couched in combative terms, we may well do harm. On the other hand, I have a major problem with the notion that we should be good little consumers just to protect specialized services. I am particularly appalled by the fact that there have certainly been instances over the past couple of years where I am satisfied that agencies have tried to utilize this argument to muzzle criticism.
If we as consumers have a responsibility to approach criticism carefully, specialized agencies also have responsibilities. I believe it’s appropriate to hold specialized agencies to a higher standard of behavior than we would expect of generic providers. I also believe we have a right to expect that agencies will take blind people’s concerns seriously and respond to them appropriately.
This does not always mean telling consumers they are right. It does mean that we must be sure that the needs of consumers are paramount within the agencies and that responses to criticism should be knee-jerk or defensive. There are systems that are set up to allow for consumer input and there are requirements within the Rehab Act that such input be included as a part of the development of state rehabilitation plans.
I think there’s a real question as to how well these systems now work! How do we assure that consumer input to agencies is effective? First, we lobby for positions on advisory committees.
Second, we should be sure our members attend state or regional forums and have appropriate input to offer. Third, each state affiliate should probably set up meetings every year with the leadership of their state agencies where they can provide feedback.
These efforts will assure that we are better known as an organization but will do nothing to make certain that our issues are carried forward. This is where the partnership often breaks down. It’s easy for agencies to listen. It requires much more effort to actually implement what we propose. We must put our concerns in writing and set time lines that agencies can be expected to adhere to in responding to our issues.
We as consumers must be prepared to stand up for what we want from agencies. If this upsets some people, so be it. Specialized agencies have an obligation to justify the existence of separate, specialized services. We in the American Council of the Blind have long championed specialized services; we will continue to do so. However, we will also continue to expect to be consulted and will continue to justify our support based on the quality of the services blind people receive. If services are poor, there is no reason for us to support those who provide them. In fact we have an obligation to work to see them improved. Ultimately, the issue is how best can we assure that blind people in every state of the union receive the best services money and training can buy! Our role as consumers is clear! We must demand the very best that agencies can provide!
We must also demand the very best that blind people can provide! Just as we must expect service providers to be building services that are effective, we must expect consumers to act responsibly as well. Too often blind people use their disability as an excuse for their failure! Too often blind people expect us to support them because they are blind, not because they are right! Too often as well blind people expect that the organization will do their fighting for them! Excellence is what we should be about!
Excellence and high expectations apply just as surely to blind people as they do to agencies and we should expect consumers to do their very best just as certainly as we believe that agencies must work hard!
In the past year there has been an associated agency of National Industries for the Blind where there may well have been mismanagement! There has been a letter of finding that suggests that Texas may not have done a good job accommodating its blind employees. Some would have us remain silent on these issues on the ground that criticism will hurt other agencies that are doing a good job. This is a very difficult issue for me! I think that we certainly can do harm if we are not careful. I also think that we can do more harm by allowing people to believe that we will remain silent out of solidarity! I think that agencies need to police themselves and each other! Once more we come to the place where, in my opinion, standards become important. We have a need to continue to work for the development and implementation of standards of services that are outcome-based and consumer-driven! This is at the very heart of the 1992 amendments to the Rehab Act and needs to be the cornerstone of what we do! True agency accountability to the consumers they serve and the consumer organizations in their communities would go a very long way toward assuring that specialized services would live up to what we expect of them!