Center for Self-Determination Comments and Reflections on the CMS Proposed Rules for the Home and Community Based Waiver by Tom Nerny

[Guest guest]

CENTER FOR SELF-DETERMINATION

TOM NERNEY

COMMENTS AND REFLECTIONS ON THE CMS PROPOSED RULES FOR THE HOME

AND COMMUNITY BASED WAIVER

These comments revolve essentially around:

Target groups

HCBS settings

Person centered planning

Health and welfare concerns

There are some proposed issues confronted here that demonstrate real

leadership on the part of

CMS. There are, however, some missing pieces in these progressive sections

that would add

needed clarification and better understanding. There are also some parts

that have the potential to

set the field of personal planning back, authorize compromises that will

come back to haunt

everyone, and, ignore areas needed for any full understanding of these

proposed rules. Decisions

made in one area may have profound implications for other areas but remain

unarticulated. These

comments and reflections are kept short and terse with the need for these

recommendations to be

withdrawn and the recommendations proposed in the attached " Lost Lives "

actively considered

for substitution in relevant sections in whole or in part.

Target groups

By allowing states to include different disabilities under the same waiver,

CMS is beginning to

confront arbitrary disability definitions and certain resource allocation

discrepancies among these

disability populations. It is long past time that the issue of equity in

resource allocation be

confronted and the present " loyalty " to a particular disability population

or mode of service,

often referred to as " silos " , be ended.

That said, there will be difficulties writing Waivers and defining

" services " . Will present day

anachronisms like " day activities " and " prevocational " be continued, made

available to all

populations or will there be an examination of comparative effectiveness for

these traditional

services. Virtually all of these proposed rules relate to living situations

only. They continue the

historical bifurcation of individual lives. Progressive person directed

planning has ended this

bifurcation and engaged in holistic planning. (See below: Person Centered

Planning)

By not defining a service or addressing which ones would be appropriate, by

ignoring the issue

of quality of life and by not defining what a " unique " need may be, a large

blank space emerges

that will leave many without necessary guidance. What are the commonalities

among all

populations? Why should quality of life expectations be different from and

lower than those that

all Americans take for granted? Will these Waivers be required to seek those

aspects of quality

that are common to all of us and will contemporary services be subjected to

a comparative

analysis that demonstrates worthy outcomes?

HCBS settings

Once again CMS is providing leadership in resolving or attempting to resolve

appropriate

" settings " for reimbursement to be claimed under HCBS. Happily, the

extension of current

institutions under different language will be stopped. This activity

outlawing certain practices is

summarized this way:

..facilities.do not allow individuals to choose whether or with whom they

share a

room, limit individuals' freedom of choice on daily living experiences such

as meals,

visitors, activities, and limit individual opportunities to pursue community

activities

If one or more of these practices make a service ineligible for HCBS

reimbursement, then a very

large number of HCBS-funded group homes and virtually all " day " programs

would have to be

immediately decertified. Spontaneity and flexibility are not hallmarks of

the present system.

Apparently the ADA and Olmstead will only apply to some small portion of

human services.

One of the critical components missing seems to be experience on the ground

where everyday

practice is observable. Perhaps the population of persons with developmental

disabilities will

give the best evidence: the majority of those in service live fairly

regimented lives revolving

around the organizational and personnel needs of provider agencies.

One more topic in this area is of significance. The proposal to use

community Medicaid funding

in assisted living facilities is a very bad option. Aside from reinforcing

the cultural norm of

segregation for older people, it begins an insidious process of creating a

double standard. Many

assisted living facilities are on the same grounds as nursing homes, most

residents don't drive

severely limiting community activities which are mostly done in groups and

in many ways

resemble those residences planned for institutional grounds that are

prohibited apparently for

younger people. A little more segregation is OK if you are older? Can CMS

possibly mean this?

Person centered planning

Only a few comments here. Apparently the person to be served can " direct "

the planning

process. However, the plan may also reflect whether and what services an

individual may direct.

Who decides? Since almost all planning participants will have some conflict

of interest, it

appears that someone with such a conflict or a group will determine how to

resolve conflicts of

interest. When the plan includes individually identified goals, they may

include goals and

preferences related to, among other things, relationships, community

participation, employment,

income and savings. Imagine a life plan that did not include those. In

reality the only right

enjoyed by the person to be served is to state a " preference " . For those who

wrote these proposed

rules the word " preference " seems to resonate better in the context of

choosing vanilla over

chocolate ice cream. The composition of the team is really not under the

control of the person

and neither are the services. In other words there are few or no substantive

rights established

here.

This was the way person centered planning was done decades ago. Today it

represents the lowest

common denominator. It was been passed by person directed planning where

control and

authority are in the hands of the person to be served. For Michigan, e.g.,

to adopt this approach it

would set the state back about three decades. Tens of thousands of

individuals under selfdetermination

control the entire process with whatever assistance they need. This entire

section

should be removed and replaced with contemporary practices. " Best practice "

is entirely ignored

here.

Health and welfare

The discussion here needs little explication. CMS wants to create

intermediate steps prior to

decertification when the health and welfare of those served is in jeopardy.

In this entire set of

proposed rule-making this is the only section where sanctions are discussed.

A person may be

personally impoverished, live a regimented life bereft of friendship and

existing on the periphery

of the community. No meaningful life at all. But CMS here is making clear to

the states that

those issues won't get you in trouble-only issues of liability. No wonder

most states have

reproduced a liability system in lieu of a quality assurance system.

Recommendations

Attached to this commentary is a paper on " Lost Lives " which captures the

inadequacy of

the present system and proposes a new system based on universal human

aspirations. For

your consideration are two new self-determination bills just submitted to

the state

legislatures in both MA and California. The writing is on the wall and the

advocacy

community is watching Medicaid collapse before their eyes. They are now

taking the lead.

It should be CMS or at least in partnership with CMS. Taking the lead in

moving

backwards is not leadership, it is surrendering to a past replete with

ignorance of the

equality of persons with disabilities.

Partridge

Northern Illinois Field Organizer

Illinois Association of Microboards and atives

www.iambc.org

815-262-0699

3028 N. Trainer Road

Rockford, IL 61114

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A life changed for the better is practice based evidence.

The Illinois Association of Microboards and atives is intended for

those who want to explore possibilities of alternative services for

themselves or their loved ones. The project assists persons with

disabilities and their families and friends to create non-profit

corporations that allow them to live self-directed lives through the use of

person-centered planning, community supports and resource management.