1. Advocating for Crisis Services
Erin Haw & Kara McCallum
disAbility Law Center of Virginia

2. Presentation Outline Where have we been? Where are we going?
Disability Rights
Advocacy Strategies
Participant Experiences

3. 1. Where have we been?

4. MENTAL
HEALTH
SERVICES
DEVELOPMENTAL
DISABILITY
SERVICES ?

5. 2008 2010 2011 2012 DOJ launched a CRIPA investigation at CVTC.
DOJ expanded its CVTC investigation to include other training centers and community based care.
2011
DOJ completed its investigation and issued a findings letter.
2012
A federal judge approved the settlement agreement reached by DOJ and Virginia.

6. 2011 DOJ Findings Letter
The Commonwealth also places individuals currently in the community at risk of unnecessary institutionalization at CVTC and other training centers, in violation of the ADA. Systemic failures that cause this violation include:
The Commonwealth’s failure to develop a sufficient quantity of community services to address the extremely long waiting lists for community services, including the 3,000 people designated as “urgent” because their situation places them at serious risk of institutionalization; and
The Commonwealth's failure to ensure a sufficient quantity of services, including crisis and respite services, to prevent the admission of individuals in the community to training centers when they experience crises.

7. 2012 Settlement Agreement
The Commonwealth shall develop a statewide crisis system for individuals with [I/DD]. The crisis system shall:
Provide timely and accessible support to individuals with [I/DD] who are experiencing crises, including crises due to behavioral or psychiatric issues, and to their families;
Provide services focused on crisis prevention and proactive planning to avoid potential crises; and
Provide in-home and community-based crisis services that are directed at resolving crises and preventing the removal of the individual from his or her current placement whenever practicable.

8. 2. Where are we going?

9. Current Crisis Services System
REACH / Children’s DD Crisis Services
CSB Emergency Services
Law Enforcement / Criminal Justice System
Crisis Stabilization Units
Mental Health Hospitals

10. Future Crisis Services System?
Expanded REACH / Children’s DD Crisis Services?
Enhanced Medicaid Waiver Services?
Increased Numbers of Behavioral Support Professionals?
Better Trained Law Enforcement / Criminal Justice System?
More Crisis Stabilization Units?

11. 3. Disability Rights

12. Rights: Federal US Constitution Americans with Disabilities Act (ADA)
Civil Rights of Institutionalized Persons Act (CRIPA)
Medicaid Home and Community Based Services (HCBS)
Individuals with Disabilities Education Act (IDEA)
Section 504 of the Rehabilitation Act

13. Rights: State
Code of Virginia: Title Behavioral Health and Developmental Services » Chapter 4. Protection of Consumers
Human Rights Regulations
DMAS Medicaid Handbook
DBHDS Children’s Residential Facilities Rules and Regulations
DBHDS Licensing Regulations for Providers (Except Children’s Residential)

14. Rights & Standards: Local & Programmatic
REACH Program Standards
Children’s DD Crisis Services Program Standards
Private Providers
Community Services Boards (CSBs)

15. 4. Advocacy Strategies

16. Power Poses

17. Strategies: Your Advocacy
Be clear about what you want
Fight the urge to tell your entire story
Prioritize your concerns and address one at a time
Use written communication when possible
Request responses in writing
Direct your communication to the entity that holds responsibility to “fix” your problem
If you don’t get a response “bump it up!”

18. Strategies: Your Advocacy
Get to know the system and key players
Attend public meetings and use the public comment period:
Settlement Agreement Stakeholder Meetings
Local Human Rights Committee Meetings
State Human Rights Committee Meetings
REACH Advisory Council Meetings
Legislative committee meetings
Contact state and local law makers
Get to know the system and key players: program standards, regional contact, central office contact
Public meetings are just that…you can use the public comment period to notify people of your concerns

19. Helpful Contacts
Russell Payne, Constituent and Stakeholder Relations, Behavioral Health Services, ,
Heather Norton, Community Support Services, Developmental Services,
Community Resource Consultants
Regional Support Teams
Critical and Complex Consultation Team
Discuss limitations to the process

20. Strategies: dLCV’s Advocacy
dLCV filed an amicus brief
Public reports
Collaboration with advocacy partners
Educating stakeholders and legislators
Formal complaint mechanisms
Written requests / negotiation
1. Amicus Brief: Submitted in December 2015 in support of DOJ’s request for a court-ordered implementation schedule of the Settlement Agreement.
Concerns highlighted in the Amicus Brief include: continued harm for people I/DD in Virginia due to the State’s non-compliance with the Settlement Agreement.
Highlighted concerns:
lack of crisis services and community supports to prevent unnecessary institutionalization
fragmented system
dangerous conditions in remaining training centers
dangerous conditions in psychiatric facilities
multiple barriers to discharge from psychiatric facilities
2. Formal Complaints: Person specific and systemic concerns have been brought to the Department of Justice, the Independent Reviewer, DBHDS Central Office
Issues of concern echo the Amicus Brief.
Other concerns:
Admissions to training centers from psychiatric facilities
Lack of crisis services for children
State operated psychiatric facilities are the only no-refusal sites

21. dLCV Crisis Services Portal

22. dLCV Crisis Services Portal
Complaints processes available for:
REACH
Office of Human Rights
Office of Licensing
Virginia Department of Health
Virginia Department of Health Professions
Medicaid Fraud Unit
Virginia Department of Social Services
Office of the State Inspector General
Should we also include performance contract/third party contract enforcement??? – has Steve provided any updates on the viability of this?

23. 5. Participant Experiences
We want to know about what you or people you support have experienced in regards to crisis services. We want to better understand what you or the people you support need to prevent crisis or institutionalization.
I am going to ask a few questions, please reflect on your experiences or the experiences of people you support. You do not need to share your experience or the experience of the people you support if you do not want to. After I ask a few questions, I will open he floor to people who do want to share. Feel free to jot down some notes if it is helpful. Erin and I will be available after the presentation to speak with people if you prefer to talk with us one to one.
Have you or someone you support been in crisis recently? Who responded to the crisis?
Who was there to help you or the person you support?
What did you or the person you support get from the people that responded?
What did you or the person you support need?
What would you change about the experience?
What strategies have you used that have been suc

24. Contact Information
disAbility Law Center of Virginia Willow Lawn Drive, Suite 100 Richmond, VA (phone) (fax)