Developmental Disabilities Reform Act

Draft Review & Revision Meeting 4

May 14, 2009
415 Michigan Avenue, NE

Meeting Notes

In attendance: Tina Campanella, Quality Trust;

Rosalind German, Quality Trust; Thelma Green,
Project ACTION!; Mat McCollough, Office of Disability
Rights; Mary Lou Meccariello, The Arc of DC; Victor
Robinson, Project ACTION! / Quality Trust; T.J.
Sutcliffe, The Arc of DC; Bob Williams, DDS

Meeting notes:

1. Welcome, Introductions and Announcements

The group welcomed new participants.

Notes from Meeting 3 were distributed. Meeting 3

participants are asked to review the meeting notes and
contact T.J. Sutcliffe (tjsutcliffe@arcdc.net or 202-636-
2963) with any corrections. Meeting notes are not

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intended to be a transcript of the discussion, but rather
attempt to highlight key items discussed and the
resolution of each item.

A revised calendar of meetings was shared with the

group. Topics have been reorganized, but dates and
times have not changed.

T.J. has asked the 5 Expert Review Panel members to

provide short biographies; 4 have done so. She hopes to
be able to provide biographies for all members of the
Panel at the next meeting.

2. Discussion of: Support and Services; Family

Supports; Family Support Council;
Informed Consent; Independent Panel

The group discussed the “Support and Services” section

of the draft DDRA and agreed to change the section in
the following ways:

Clarify that supports and services must be delivered

within 30 days of completion of the ISP. Explore
language describing notice, or waiting list

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 placement, if a support or service can’t be delivered
within 30 days.

Clarify that the Developmental Disabilities

Administration (DDA) is authorized to serve persons
with developmental disabilities of all ages by
removing the reference to “persons age 18 and older”
on page 36, item (b), line 19.

Strengthen the training requirement to include

training on how a person can be an active participant
in the development, implementation and monitoring
of his or her ISP (page 37, item (c), lines 17 to 21).

Require DDA to provide transition services by no

later than age 14 to help youth with disabilities
successfully transition from school to adult life.

Clarify DDA’s role in helping people to connect with

other government agencies and coordinate the
various services they need and receive.

Delete research initiatives (page 38, item (d), lines 6

to 7) as being more properly the primary role of the
Department of Health. DDA may wish to coordinate

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 with DOH on research initiatives but it is not
necessary to discuss this in the legislation.

The group discussed the “Family Supports” and

“Family Support Council” sections of the draft DDRA
and agreed to change the draft in the following ways:

Restructure the definition of “parent” to clarify that

this term applies to parents of both minors and
adults.

Remove repeated references to parents of minors as

having decision-making control over the minors’
supports and services. In the same way that it is
unnecessary to repeatedly refer to the role of
guardians and durable powers of attorney, it is
unnecessary to repeatedly refer to parents of minors
as having decision making authority. Parents of
minors already have this right under law. Repeated
references may unintentionally take away from
efforts to help minors learn to exercise choice and
control. Removing the repeated references will not
affect the right of parents to make decisions on
behalf of their minor children.

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Restructure the Family Support Council in the
following ways:

o 15 members: family members and people with

developmental disabilities
o Majority family members
o Try to have cross-representatives from key
disability-related boards & commissions (e.g.,
Special Education Advisory Panel, Interagency
Coordinating Council, Developmental
Disabilities Council etc.)
o Appointed by the head of DDA
o The FSC should be able to invite agency
Directors / designees to participate

The group discussed the “Informed consent” and

“Independent panel for administration of psychotropic
medications” sections of the draft DDRA. The intent of
these sections was to continue the changes made by
recent health-care decisions legislation. As a result, no
changes to these sections were recommended at this
time.

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The group referred the following item to Meeting 5,
Quality standards & Monitoring (Thursday May
21, 2009):

Consider adding accessibility (as required under the

Americans with Disabilities Act, Section 504 of the
Rehabilitation Act, and related local law) to DDA’s
monitoring roles. This was in response to proposed
changes by a member of the Expert Review Panel.
T.J. will follow up to get more information on what
the Panelist’s proposal.

The group discussed the following items but agreed

that no changes to the draft DDRA are required:

The group noted that some important changes do

not require legislation. For example, DDA could
proceed today with a needs assessment, or with
increased training opportunities. The group hopes
that DDA will be able to use some of the ideas
generated during the various community meetings
on the DDRA even before the legislation moves
forward.

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In response to a question about whether the bill
includes services for people with developmental
disabilities living with HIV/AIDS, the group agreed
that it does and that additional legislative language
is not needed.

In response to a question about whether the bill

should state that residential facilities should comply
with federal standards for Intermediate Care
Facilities and Long-Term Care Facilities, the group
agreed that this was unnecessary since federal
standards already apply. Additionally, as the District
increasingly supports people living in the
community – as opposed to facilities – the group did
not want to apply facility-based standards to private
homes, supported apartments etc.

In response to a question about whether the bill

should include a Burlington-like remedy (where, if
DDA did not provide a service or support under the
ISP, a person could buy the service on the private
market and get reimbursed by DDA), the group
agreed that this was unlikely to happen and should
not be included in the draft.

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In response to a question about whether the
definition of “family” is too broad, the group agreed
that the current draft definition is appropriate
because it represents the many forms that families
may take. The group prefers a broad definition so
that families will not be turned down for needed
supports based on a narrow definition.

Finally, the group agreed that it would be helpful to

have a glossary of key terms, such as “guardian” and
“durable power of attorney,” to help people understand
the DDRA. T.J. will work with the Drafting
Subcommittee to produce a glossary. It can be a work-
in-progress that grows as the draft DDRA evolves.

3. Next meeting

The next meeting will be Thursday, May 21st from 3:00

to 5:00 p.m. at The Arc of DC, 415 Michigan Avenue,
NE. The topics for the next meeting will be “Quality
standards and monitoring,” “Records,” and
“Interagency coordination.”

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