There once was a time when there were few rules and regulations
governing the field of mental retardation. The institutions were
essentially out of sight and out of mind, and their terrible
conditions and abuses represented the field's dirty little secret.
Then came the 1960s and the 1970s and the seemingly endless exposes
of institutional conditions, law suits, and legislation designed to
protect people with mental retardation from the abuses they were
suffering. Now it seem, almost everything in the field of mental
retardation and developmental disabilities is subject to rules and
regulations.
The regulatory environment surrounding services for people with
disabilities stifles innovation and creativity, places undue
emphasis on paperwork at the expense of quality of services, and
undermines normalization and community integration. The Medicaid
program is one of the primary culprits in contributing to
regulatory excess in the field of developmental disabilities. The
Intermediate Care Facilities for People with Mental Retardation and
Related Conditions (ICF/MR) program, other Medicaid programs (day
treatment), and even the Medicaid Homes and Community-Based
Services Waiver program are highly regulated and threaten to remove
the heart and soul from community services. Medicaid, however, is
only an extreme example of overregulation of services. Many states
have developed regulations that exceed federal requirements and
impose rigid rules on nonMedicaid-funded services, such as family
supports. The major class action law suits of the 1970s and 1980s
undoubtedly played a major role in transforming service systems
from an institutional to a community-based model, but left a legacy
of strict monitoring for compliance with impersonal standards based
on a presumption of abuse and neglect in institutions and community
programs alike.
The impact of regulations in the field of developmental
disabilities is so pervasive that it extends beyond the boundaries
of the service system itself into the domain of the community. In
some instances, state agencies have attempted to impose regulations
on nonfunded "life-sharing" arrangements and threatened to
professionalize unpaid roommates and friends of people with
developmental disabilities.
So, the question to be asking is not "Are services overregulated?"
--because this seems like a foregone conclusion--but rather, "What
should we do about overregulation given the historical pattern of
abuse and neglect?" In the remainder of this article, I argue that
regulations are paradoxical by nature and counterproductive to the
achievements of their intended goals.
Regulations in the field of developmental disabilities represent
the bureaucratization of values. The problem with rules and
regulations lies not in evil intentions and narrow vision of those
who promulgate them or in the insensitivity and ignorance of those
who monitor their compliance, but in the bureaucratic nature of the
regulations themselves. No matter how noble or humanistic the
values underlying rules and regulations, the process of
bureaucratization distorts those values and makes it less likely
that they will be fulfilled. As Blatt (1981) wrote, "Surely there
can be no doubt that if `Love thy neighbor' were a federal
regulation, it would become meaningless and useless" (p.346).
Regulations reflect the abuses of the past, and sometimes the
present, but circumstances the potential of the future. The
rules and regulations governing the field today are an outgrowth of
institutional abuse and are designed with institutions in mind.
For every form of evil and abuse that has been found at
institutions, someone has come up with a rule or regulation to
address it. Regulations are not without their rationales. When
taken out of the institutional context, regulations lose their
rationality. Regulations presume the impersonal, hierarchical, and
bureaucratic structure of institutions. The further removed from
this structure, the more irrational and counterproductive they
come. Herein lies the paradox: In order to meet the regulations,
as setting or a home must become impersonal, hierarchical, and
bureaucratic, and these are some of the features that made
institutions dehumanizing and abusive in the first place. As the
field tried to move toward more person-centered and less
institutional approaches to supporting people with developmental
disabilities and their families in the community, regulations
threaten to drag it back to the institutional model. It is a bit
like subjecting home-cooked meals to the same rules that govern
fast-food restaurants. This is the surest way to destroy the
home-cooked quality of the meals.
Regulations are best suited to unnatural environments but
encourage investment in those environments. The more unnatural
the setting--the more it departs from typical home and family
life--the more highly regulated it should be, at least at face
value. Because institutions represent the most extreme form of
unnatural settings, it follows that they should be subject to the
most stringent regulatory requirements. Regulations and
institutions seem to deserve each other. The closer any setting
approximates an institution, the more highly regulated it should
be. This leads to yet another paradox of regulations in the field
of developmental disabilities: the more highly regulated a
setting, the more resources it requires, and the fewer resources
that are available to alternative settings.
Regulations foster ritualistic compliance and not fulfillment of
their spirit. The more rigid the rules and regulations, the
more compliance with them becomes an end in itself. Institutions
and ICFs/MR become consumed with demonstrating compliance with the
active treatment provisions of federal regulations, and the goals
of active treatment take second place. Paperwork becomes
synonymous with programming and looking good replaced doing
good.
Regulations place control and power in the hands of regulators,
and not people with developmental disabilities and their families.
People with developmental disabilities and their families are
often called "consumers" of services, but they are actually third
parties in transactions between funders, with their funds and
regulations, and public and private agencies, with their programs
and services. Rules and regulations, whether imposed by federal
programs, state agencies, or courts, place regulators and monitors
as the guardians and protectors of people with developmental
disabilities and their families and, in so doing, deprive them of
control over their own lives.
Regulations direct attention to concrete and tangible things and
trivialize the most important things in life. A final paradox
of regulations is that the most important things in life are the
most difficult to measure objectively. As a consequence, tangible
things, such as the number of square feet per bed, and trivialize
the most important aspect of services. Active treatment comes to
be equated with paperwork, rather than the quality of programming.
This is why dismal programs with good policies and plan can attain
certification and good programs with insufficient paperwork can be
cited for deficiencies.
Regulations are often criticized for their narrow focus on the
medical and treatment aspects of services to the exclusion of
community integration and normalization, or social role
valorization. Some states are actually moving to incorporate
integration and normalization into their regulatory schemes and to
require agencies to implement "outcomes"--oriented data-collection
systems. Because regulations emphasize tangible things and
trivialize important things, such schemes are doomed to suffer from
the same problems characterizing other regulations.
If regulations represent a paradox, what are the lessons for
regulatory reform in the field of developmental disabilities?
First of all, we need to be modest in our expectations of
regulations. In view of the historical pattern of abuse and
neglect of people with developmental disabilities in institutions
and other settings, regulations are a necessary evil to content
with evils in the world. Because of their inherent limitation and
counterproductive effects, however, we cannot expect impersonal
rules and regulations to produce quality services or decent lives
for people with developmental disabilities, and, in fact attempts
to do so may actually have the opposite effect. Regulations should
be kept to a minimum and confined to concrete health, safety, and
related issues.
Second, regulatory reform will depend on reform of the current
developmental disability service system. The current
regulatory framework is an outgrowth of a service system dominated
by institutions and agency-owed and operated facilities. As long
as people with developmental disabilities remain in institutions,
community ICFs/MR, group homes, and similar settings, these
facilities should be subject to regulations. If, however, the
service system and funding mechanisms shift to subsidies and
voucher approaches for people with developmental disabilities and
their families that place control directly in the hands of those
who receive services, the need for regulations will be greatly
reduced.
Third, as an alternative to the current regulatory framework,
people with developmental disabilities and their families should be
provided with clear-cut rights and due process mechanisms through
which to exercise those rights. Despite its shortcomings, P.L.
94-142 contains vastly superior protections to the highly regulated
ICF/MR program. If people with families can act on their own
behalf as opposed to depending upon regulators and monitors, then
disputes within the service system can focus on important things
rather than the superficial aspects of services.
Finally, informal mechanisms to promote the quality and
responsiveness of services--agency self-evaluations, consumer
surveys, self-advocacy, citizen advocacy--need to be supported and
encouraged. These are not a substitute for formal mechanisms
in all cases, but in the long run stand a better chance of
achieving quality of services or life.
Many states are experimenting with more flexible and responsive
approaches to support children and adults with developmental
disabilities in the community, and even some recent federal court
orders have incorporated them. These approaches hold great
promise, but it remains to be seen whether they will fall prey to
the regulatory excesses dominating the field today.
Reference
Blatt B. (1981). In and out of mental retardation.
Baltimore: University Park Press.
This is a revised version of an article that appeared in
Mental Retardation, 30(3), 180-195.
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