CONTRASTING APPROACHES

by John O'Brien and Connie Lyle O'Brien

Selecting reasonable action to increase people's security implies more than a choice of tactics. Two different approaches require consideration.

One approach, which we call "Administrative Regulation and Related Legal Advocacy," formalizes the relationship between people with disabilities and those who provide assistance to them. This approach codifies expectations in statute, regulation, and policy, or--if these fail--in judicial decree. The system values compliance and rationally planned improvement in standard and practice. Judgments about the adequacy of response belong to professionals, with a variety of due process mechanisms to resolve conflicts.

The second approach, which we call "Lifesharing and Other Personal Commitments," calls for and relies on personal commitment. People choose to build intentional community or protective relationships with one another. People value the struggle to live creatively in fidelity to the spirit of their commitments. Judgments about quality of shared life depend on mutual trust and listening among those who share a commitment.

Each approach offers something different, but the two mix poorly. Compliance undermines the spirit of commitment. Fidelity depends on trust and breaks down without personal identification and shared values. See pages 6 and 7 for depiction of these approaches.

ADMINISTRATIVE REGULATION & RELATED LEGAL ADVOCACY

CONTRIBUTIONS

Allows rapid change. Some things can be done "with the stroke of a pen."

Permits broad, uniform movements in policy.

Can send strong signals about system direction.

Can shape the common sense of what is unacceptable.

Can shape the common sense of what is possible and desirable.

Can clarify what is in people's best interest.

Does not require waiting for public attitudes to change.

Offers public debate of difficult questions; can improve understanding by insuring that different points of view are heard and assumptions and conclusions are challenged.


Offers leverage to increase vulnerable people's power to seek fair treatment in specific situations.

Can be used as a way to push new issues or start new initiatives.

Offers a way to bring people to the table to negotiate with one another.

Encourages people that something can be done; that progress is being made.

LIMITS

Adversarial relationships, necessary for proper procedure, may harden, pushing apart people who need to work together to achieve results.

Regulations are infrequently written by those most affected. The people closest to the situation typically have to rely on others who are experts in procedures to speak for them.

Regulations limit flexibility--and provide an excuse for inflexibility. There is a limited allowance for difference in individual situations.

Regulations can be used on people with disabilities to maintain and extend the power others hold over them. They can be used to justify practices that are against the best interests of a person with a disability.

Regulations are often very hard for people with disabilities to understand.

Procedures for insuring fairness can get complicated and take a very long time.

Because regulations have to take account of the interests of several different groups, they can represent a compromise on what would be best for people with disabilities. They can represent what the regulators think they can get people to do rather than what they think is best.

Regulations can be hard to change, even when people agree they don't work well.

Money isn't necessarily attached to regulations. Providers can be asked to do things without enough money to do them. And providers that don't live up to regulations can still go on getting money and keeping people.

There are things that are important for people with disabilities that others can't be required to do.

Changes in words in regulations can make some people think that things are really different for people with disabilities. This isn't always true.

WHAT CONTRIBUTES TO EFFECTIVENESS?
Insure periodic review that accounts the positive and negative effects on people. Look for negative longer term effects that build up over time. Look for unintended consequences.

Increase control or regulations by consumers. At least support the active involvement of consumer groups in negotiating regulations. This support may include people learn the skills they need to influence the regulatory process.

Time limit regulations to insure that they are renegotiated regularly.

Involve consumers and people close to them in reviewing draft regulations to ask exactly what they should expect from regulations and to identify possible problems. This purchases more thoughtfulness and improved foresight at the cost of making regulatory changes take longer.

Look for ways to regulate that support individualization and innovation.

Make tests of parallel systems such as peer review instead of regulatory compliance.

LIFESHARING AND OTHER PERSONAL COMMITMENTS

CONTRIBUTIONS

Answers the fundamental human need for committed, freely given relationships and for community of support and effort.

Complements each individual's gifts.

Raises basic questions-- "Why are we here?"--for every member and provides the place for people to look for the answer with others who share the search.

Not necessarily dependent on human service funds.

Offers natural ways for people to meet and support one another without professional/client roles intervening.

LIMITS

Can't be done for masses of people.

Grows slowly in terms of the number of people included.

Relationships develop over time. There are lots of ups and downs. There are disappointments and sorrows as well as achievements and jobs. Lifesharing is not a "fix" for suffering, but a way to acknowledge and share suffering.

There are limits to what people can do for each other within relationships of equality and friendship.

Doing away with professional/client distinctions doesn't resolve issues of authority.

There are very powerful social forces against lifesharing. It contradicts many common beliefs and practices.

People do break personal commitments.

There are some people lifesharing doesn't suit

Abuse is possible in lifesharing situations.

WHAT CONTRIBUTES TO EFFECTIVENESS?
More people to live voluntarily in intentional community, including people with positions in managing the service system.

Maintain the space lifesharing needs to grow by respecting its limits and not expecting it to take over for large numbers of people.

Avoid the temptation to present lifesharing as a fix.


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