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

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 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.

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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;

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 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 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.

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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 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 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 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?

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

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