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.
| 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.
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. |
| 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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