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 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 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.

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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 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.

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.

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

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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.

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.

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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