Developmental Disabilities Reform Act

Draft Review & Revision Meeting 1

April 23, 2009
441 Fourth Street, N.W. Room 1117

Meeting Notes

In attendance: Mark Back, DDS; Charlie

Back; Sandy Bernstein, University Legal
Services; Tina Campanella, Quality Trust;
Karen Davis, QT Board; Thelma Green, Project
ACTION!; Emma Hambright, DDS; Linda
Landers, DDS; L. Thomas Mangrum, Project
ACTION!; Mat McCollough, Office of Disability
Rights; Mary Lou Meccariello, The Arc of DC;
Melissa Pullins; Victor Robinson, Project
ACTION! & Quality Trust; Clydie Smith, DDS;
T.J. Sutcliffe, The Arc of DC; Shawn Ullman,
University Legal Services; Morgan Whitlatch,
Quality Trust; Bob Williams, DDS

Meeting notes:

1. Welcome and introductions

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2. Calendar changes

The June 18th meeting will be rescheduled due

to a conflict with the quarterly hearing in the
Evans case.

To accommodate people who are unable to

attend review and revision meetings on
Thursday afternoons, a Saturday meeting will
be held on May 30th. Location is to be
determined. An announcement will go out soon.

3. Process

This meeting was the first in a series of

meetings to review and revise the draft
Developmental Disabilities Reform Act (DDRA)
to get the draft ready for introduction at the DC
Council. Meetings will deal with concepts and
ideas, not line edits. The Drafting
Subcommittee will take the recommendations
from each meeting and turn them into revised
legislative language. A new draft will be sent out
every 3 weeks so people can see the changes

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being made to the draft as the process moves
forward.

To facilitate an inclusive process, meeting

participants agreed to:

Avoid acronyms and jargon;

Use respectful language when referring to
people with disabilities; and

Respect the person, even if you don’t agree
with the idea.

Each meeting will cover one or more DDRA

sections, as noted on the calendar. At each
meeting, participants will review and discuss
the main elements of each section, including
key areas of concern and comments previously
submitted regarding the meeting’s topic. The
group can resolve discussion items in several
ways:

Change the draft DDRA;

Recognize the idea, but make no change to
the draft DDRA;

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Refer the idea for discussion at a different
meeting (for ideas that relate to a topic to be
covered later); or

Refer the idea to the Expert Review Panel.

Summary notes will be provided after each

meeting.

4. Rights section

The group agreed to change the “Rights” section

of the draft DDRA in the following ways:

Clearly state people’s right to freedom from

abuse, neglect and exploitation including
sexual, physical and mental abuse.

Clearly state people’s right to access their

records.

Clearly state people’s right to receive

information in an accessible manner and to
voice grievances, concerns and suggestions
without interference or fear of reprisal. This
is restating (c)(3) and (c)(4) to affirm these

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 provisions as rights of the person, not just
requirements placed on agencies /
providers.

Remove repeated references to guardians

and durable power of attorney. Such
references are unnecessary, because the
District’s guardianship law already gives a
guardian the power to act on behalf of a
person in specific ways. Recently, the DC
Council enacted a uniform guardianship law
that addresses guardians appointed in other
jurisdictions.

Include a requirement for agencies to

provide training for staff on rights.

The Drafting Subcommittee will work to

clarify the meaning of “restricted
procedures,” procedures used for
“convenience,” and “standing orders.”

Change the provisions on movement from a

less to more restrictive setting to become a
requirement for DDA to notify a person

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 before any service change and to provide
information on how a person might
challenge the change (as described in more
detail in the grievances section). Include a
provision for what the draft calls “exigent”
situations; the Drafting Subcommittee may
want to spell that term out more or use a
different term.

The group discussed the following items, but

agreed that no changes to the draft DDRA are
required:

Many laws are not currently being enforced

or fully implemented. For example, there
are many problems with lack of
accessibility, Metro Access, and other basic
services. Having a good law is necessary, but
does not guarantee good implementation.
Everyone needs to work together on this.

A comment submitted before the meeting

asked if there would be a fiscal impact as a
result people having a right to control and
choice. The group agreed that people

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 exercise their right to choice and control
over available options. This right does not,
however, require the District to provide
people with limitless choices at any cost. As
a result, there is no fiscal impact.

A comment submitted before the meeting

questioned whether rulemaking is needed
for the rights section. The group agreed that
rulemaking is needed to clarify how
agencies put in place policies and
procedures to recognize people’s rights.
Rulemaking is not needed, however, to
elaborate on the rights themselves.

At its second meeting, the Expert Review

Panel discussed whether the rights
identified in the draft apply to all people
with developmental disabilities, or only to
people who have applied for or been found
eligible for DDA services. The definition of
“person” as currently drafted creates
confusion in this area and needs to be
replaced by alternate terms such as “person
applying for services” etc. However, the

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 group agreed that the basic approach in the
current draft is appropriate: To recognize
that people with developmental disabilities
have the same rights as all other people, and
to identify specific rights that are provided
in the context of the DDA service system.

The group agreed to discuss the following ideas

in more detail at the meetings specified:

June 25th
Topics include interagency coordination and
amendments to the law that created DDS.

What responsibilities should other agencies

that support people with developmental
disabilities (not just DDS/DDA) be charged
with? Is the draft DDRA adequate to compel
the needed coordination? Is DDA clearly
identified as the lead agency?

Should the Department of Employment

Services and the Department of Health Care
Finance be added to the list of agencies that

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 are required to have interagency agreements
with DDA (on page 83 of the draft DDRA)?

Should there be a specific role for the Office

of Disability Rights in enforcing the rights of
people with developmental disabilities?

Is DDS doing enough to apply for federal

grants, not just the waiver?

June 11th
Topics include Records and Quality standards
and monitoring.

Should there be a provider report card?

How should the law address access to

records and confidentiality? Also, who
“owns” a person’s records?

5. Next meeting

The next meeting will be Thursday, April 30th

from 3:00 to 5:00 p.m. at the Martin Luther

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King, Jr. Library, 901 G Street, NW in room A
10.

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