Great piece by Tom Nerny

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CENTER FOR SELF-DETERMINATION

Tom Nerney

UPDATING THE PREVOCATIONAL SERVICES POLICY (OF CMS)

A response to recommendations for CMS clarification of its guidance on

prevocational services as submitted by the ARC, UCP, Goodwill and Easter Seals

among others

In the second week of December of 2010 several national provider organizations

led by the ARC, UCP, Goodwill and Easter Seals issued a report designed to

encourage CMS to modify and clarify their advice and guidance on prevocational

services from its present articulation (found wanting) to a more precise one

that would make compliance clearer and easier met. If CMS needs input and advice

(as it surely does and frequently welcomes) and if these regulations and

instructions need re-interpreting and modification (as they manifestly do) it

must be in the direction that brings the most fruitful and progressive supports

and services to those who are served in the present Medicaid Waiver system.

This response is meant to propose other, differing and more progressive

recommendations for language and policy changes that would bring CMS into

congruence with contemporary research and practice even if it means that the

statute itself needs to be changed. The best outcome of all would be for the

H.E.L.P. Committee to fashion language that would enable an already receptive

CMS to make changes to their guidance for the benefit of so many. It is meant

also to provide some clarification to the report especially for those who do not

remember or were not part of the field of disability during the 1970's and

1980's before interdisciplinary teams were largely phased out.

The paper purports to " .propose recommendations for updating the provisions in

the CMS Waiver Guidelines to provide greater clarity regarding the purpose and

function of expanded habilitation services in general, and prevocational

services in particular. " What follows is a long statement on values the authors

hold and the foundation upon which their recommendations will rest. At the end

of the paper, however, it becomes clear that the authors did not necessarily

mean for these statements of principle to be taken at face value.

The best way to begin this analysis is to compare the authors' early statement

of values and principles with the outcomes they later recommend for CMS. With

respect to the main issue of real work and preparation for real work (the

business of prevocational and its definition) the early statement of values is

nothing short of a paean for the individual controlling the planning and

obtaining the goal of work. Inexplicably, however, the recommendation(s) for

change in guidance from CMS have the effects of denying the joys of work and

control of one's own life for a substantial number of individuals with

significant disabilities. This process of limiting or outright denial of these

joys of living appear to be accomplished through the utilization of an

interdisciplinary team, a planning process, largely abandoned in the 21st

century and replaced by

person centered and now person directed planning and budgeting. In plain

language this paper asks us to allow heady but shallow rhetoric to mask the

regression in public policy for the benefit of provider agencies at the expense

of opportunities for those with significant disabilities.

There are many issues that may be considered here but some stand out. First, the

use of interdisciplinary teams has been replaced by person centered and now

person controlled planning. The entire role of the professional in this instance

in particular has moved from deciding for others what their future may hold to

providing assistance when requested. (This is especially true under

self-determination). By reintroducing the IDT planning process the authors drive

the arena of program planning backwards by decades ignoring the tremendous

advances that have been made in recent years.

Second, for many years individuals with disabilities have labored in perpetual

" pre-vocational " programs as opposed to " vocational " . Unfortunately what can be

funded under prevocational services includes piece work rates in centers devoted

to keeping individuals far below the minimum wage very much like the only other

population so remunerated-convicted felons. Medicaid happily pays for

activities' training that range from the insubstantial to the dreary. These are

all Medicaid funded services that are provided in the face of research and

practice that makes them obsolete. The authors could benefit from the research

on these issues.

The truth is that individuals so served seldom move from prevocational/non-work

to supported employment and are never prepared for work. In this case " pre "

means never. The first recommendation necessary here is to make explicit and

possible all kinds of assistance with work including self employment. The

incentives need to be moved toward real earnings and not some generalized

prevocational assistance, that is to say the least, wrongly named. States should

be encouraged to limit these kinds of activities.

A third and final example is one of misdirection. The authors cite their belief

in " self-determination " in their opening values statement. The purpose must be

to indicate that their recommendations are in fact supported in some way by

self-determination. Their definition of self-determination includes this

beginning: " Self Determination means acting as the primary causal agent in one's

life. " This is a definition that sometimes appears in the special education

literature and is primarily a definition of autonomy. The truth is that

self-determination in the world of human services especially as it impacts

adults and work moves in exactly the opposite direction of the authors'

recommendations. There are numerous citations for real self-determination but

the authors would do well to consult the regulations governing services for

those with developmental disabilities and mental illness in the State of

Michigan. Self-Determination is guaranteed by regulation and all have a right to

an individual budget and power and control over the resources in pursuit of a

meaningful life. In addition self-determination training accents the ability of

everyone to earn income and puts the blame for this lack squarely where it

belongs-with those now operating the system.

Ellen Garber Bronfeld

egskb@...