Gina Desmond, Advocate

1. Advocating for Your Rights
Presenter:
Gina Desmond, Advocate
1

2. DRWV: Who We Are
• Congress mandated that each state have a
Protection and Advocacy (P&A) System to protect
the rights and interests of persons with disabilities.
• DRWV is the federally mandated protection and
advocacy system for people with disabilities in West
Virginia. DRWV is a private, nonprofit agency. Our
services are confidential and free of charge.
2

3. DRWV: Who We Are (continued)
DRWV helps people with disabilities by:
• giving information and providing referrals,
• investigating abuse and neglect,
• providing direct advocacy,
• providing training on self-advocacy and rights,
• supporting self-advocacy,
• providing legal representation, and
• engaging in systemic advocacy and litigation.
3

4. DRWV: Who We Are (continued)
DRWV does not provide representation for:
• representation for family or *criminal law,
• bankruptcy,
• probate of an estate,
• personal injury,
• eligibility for Social Security benefits,
• establishing guardianship, or
• non-disability issues.
*DRWV can provide technical assistance to
attorneys regarding disability rights.
4

5. DRWV: Who We Are (continued)
DRWV has 8 federal grants.
4 disability driven programs:
• PADD - Protection and Advocacy for Individuals with
Developmental Disabilities
• PAIMI - Protection and Advocacy for Individuals with Mental
Illness
• PATBI - Protection and Advocacy for Traumatic Brain Injury
• PAIR - Protection and Advocacy for Individual Rights (assist
individuals with disabilities who were not already eligible for
other advocacy programs)
5

6. DRWV: Who We Are (continued)
4 Issue Driven programs:
• PAAT - Protection and Advocacy for Assistive Technology
(help individuals with disabilities obtain AT devices and
services)
• CAP - Client Assistance Program (help people who want to
receive services from the WVDRS or a Center for
Independent Living)
• PABSS - Protection and Advocacy for Beneficiaries of Social
Security (SSI/SSDI beneficiary who desires to work and has
a barrier keeping him/her from working)
• PAVA - Protection and Advocacy for the Help America Vote
Act (providing education and advocacy related to voter
rights, including accessing the polling place and registering
to vote)
6

7. DRWV: Who We Are (continued)
DRWV also has 1 state grant: Medley-Hartley Advocacy
Program
Medley Class Member Eligibility Criteria
• Must have a diagnosis of Intellectual Disability,
• Born on or after April 1, 1956, and
• Been institutionalized prior to age 23 for 30 or more days at
Sharpe (Weston State), Bateman (Huntington State), Lakin, Colin-
Anderson Center (CAC), Greenbrier Center, Spencer, Hopemont.
Hartley Eligibility Criteria
• An individual with a developmental disability,
• Is at risk of institutionalization,
• Is over the age of 18, and
• Is no longer enrolled in public school.
7

8. Advocating for YOUR Rights
Self-advocacy is speaking up for yourself.

9. Advocating for YOUR Rights
Self-advocacy is:
• Self-advocacy refers to a person's ability to
effectively communicate, convey, negotiate or
assert his/her own interests, needs, and rights.
• It involves making informed decisions and taking
responsibility for those decisions.
• Self-advocacy is understanding your strengths
and needs, identifying your personal goals,
knowing your legal rights and responsibilities,
and communicating these to others.
From People First of West Virginia

10. Advocating for YOUR Rights
• Know WHAT you need.
– No one knows you better than YOU.
• Be able to explain WHY you need it.
– What could you do if you had it?
– How does not having it hold you back?

11. Advocating for YOUR Rights
• Get evidence to show the need.
– Do research;
– Evaluation(s);
– Letter from your Doctor;
– Letter from your Counselor;
– Behavior documentation, etc.
• Be polite but consistent.
– Be open to compromise.
– You get more flies with honey than vinegar.

12. Advocating for YOUR Rights
12
Know the rules/regulations.
• Ask for a copy of the rules/regulations/policy.
• Get training from specialists (DRWV, WVUCED,
FairShake Network, WVDDC, SILC, KEPRO,
WVPTI, etc.).

13. Advocating for YOUR Rights
13
DRWV’s Tips:
• Ask questions, questions and more questions.
– Ask to be shown where something is in policy.
– Ask the maximum/minimum amount available.
– Ask for alternatives.
• Put everything in writing.
– Keep a copy. Write on it the date and who it
was given to.
• Send mail or e-mails, not text messages.

14. Advocating for YOUR Rights
14
DRWV’s Tips:
• Get approval in writing.
– If someone agrees to provide a service,
etc., get that in writing as well.
• If you speak with a someone regarding an issue you are
having, follow it up with an e-mail:
– “Just to follow up with the conversation we had this morning,
Gina will begin volunteering at the animal shelter on at 10am
Monday and Wednesday mornings. This will begin Monday,
April 9th. Staff will need to verbally prompt Gina to do her
work; they are not to do it for her.”
– This documents understanding on behalf of you and the
school/provider/etc. It documents your concerns, requests
and denials.

15. Advocating for YOUR Rights
15
DRWV’s Tips:
• Call your school/provider/etc. to find out what
they are doing for YOU; get updates.
– If you can’t reach your worker for an extended period of
time, ask to speak with a supervisor.
• Keep a notebook.
– Conversations held;
– Good days/bad days;
– Things that were tried and the results, etc.

16. Advocating for YOUR Rights
16
DRWV’s Tips:
• Ask for help, if needed.
• Get support from others who have been in similar
situations (circle of support).
• Visit DRWV’s website for a wealth of useful
information on various disability and non-disability
topics. Go to www.drofwv.org and choose the
“Resources” tab. From there, scroll down to the
category that interests you. Please check back
frequently for updates and additions.

17. Advocating for YOUR Rights
17
What to do when you are told “No”.
• Request the denial in writing. The denial
should have:
– What you were requesting;
– The reason it was denied; and
– Timelines to grieve, if applicable.

18. Advocating for YOUR Rights
18
What to do when you are told “No”.
• Ask for a copy of the agency’s grievance
procedure.
• Follow the hierarchy of command.
AD ● VO ● CATE
/verb: to plead in favor of/
/noun: one who pleads the cause of another/

19. Advocating for YOUR Rights
19
What to do when you are told “No”.
• Be willing to negotiate.
• Don’t stop advocating.
– Just keep swimming. I think I can.

20. Advocating for YOUR Rights
20
Support for Self-Advocates
• Support Group
– TBI Support Groups, FairShake Network, People First of WV,
Statewide Independent Living Council (SILC), local Centers for
Independent Living, Consumer Affairs Committees, etc.
• Positive Behavior Support Project at WVU’s CED:
– Futures planning helps participants develop their own goals
and create an action plan for achieving these goals. They use
tools such as Making Action Plans (MAPs) and Planning
Alternative Tomorrows with Hope (PATHs) to graphically
facilitate futures planning with the participant and their
team. Individuals on the team, including the participant, are
responsible for carrying out action steps developed during the
futures planning process.

21. Funding Citation
• The funding for this publication is provided, at taxpayer
expense, by the U.S. Department of Health and Human
Services (DHHS), Administration for Community Living (ACL);
U.S. DHHS, Substance Abuse and Mental Health Services
Administration (SAMHSA); U.S. Department of Education
(DOE), Rehabilitation Services Administration (RSA); and the
Social Security Administration (SSA). SSA has reviewed this
information for technical accuracy only. These contents are
solely the responsibility of the grantee and do not necessarily
represent the official views of the funders.
• DRWV is the Protection and Advocacy System for the state of
WV.
21

22. For more information about DRWV and
our programs or services:
22
• Call toll free: 1-800-950-5250
• Website: https://www.drofwv.org/
• Email: contact@drofwv.org
• Facebook: facebook.com/drofwv