The Evolution of the RI Developmental Disabilities Network

• 1972 Council objective: Establish a RI Legal Advocacy System.

• 1980 Council objective: Continue to maintain and develop collaboration with a state-wide protection and advocacy system.

• 1973 Council establishes a University Affiliated Facilities Committee.

• 1979 Council goal: Develop a RI University Affiliated

program.• 1989 Council objective: Fund study to establish a University

Affiliated Program• 1992 University Affiliated Program

funded by ADD at RI College. Council-funded Inclusion Institutes

begin.

Two Decades of Collaboration• 1990 Human Rights legislation, developed

by the RIDDC and the RI P&A becomes law. Establishes Human Rights Committees at every DD Provider agency and requires reporting for abuse, neglect and mistreatment.

• 1990 Council provides research from state plan to assist in RIDLC’s class action suit against MHRH for excluding dually diagnosed persons from DD services

• 1995 Council works with Bob Briggs (Region 1 Rep) to develop MTARS at Annual Planning Retreat

• 1998 RI DD Network partners and 20 other disability groups, plan and sponsor a Health Care Forum focusing on what managed care could mean for people with developmental disabilities

Two Decades of Collaboration- con’t

• 1998 – 2000 Council funds UAP at RI College with grants for Personal Support Advocate Training, Inclusive Ed Training, Inclusive Ed Guide, Partnerships with Policymakers, Employment Training and Conferences

• 2000 RI DD Network partners with other disability agencies sponsor a 1& 1/2-day conference on self-determination for youth and adults. Focus on Cash and Counseling program, Options program in RI, and self-determination in school curricula

Ongoing Network CollaborationParents with Intellectual Disabilities

• Early 1980’s, Council recognizes an emerging need for increasing the parenting skills for adults who have intellectual disabilities

• 1992 - Council creates an objective: Council-funded family support initiative begins through UAP. In later 1990’s DLC begins to open cases for parents with intellectual disabilities whose children are in state custody

• 2000 – Present: Council grant to RIDLC for DD Network activities including funding for UCEDD Family Support project for parents with cognitive disabilities

2000 - present

• Developmental Disabilities Network planning meetings are now focusing on Olmstead Decision, Self-advocate Leadership and parents with cognitive disabilities

• Developmental Disabilities Council and Disability Law Center become members of Division of Developmental Disabilities’ Incident Management Trends Analysis Committee

2005

2006• Developmental Disabilities Network hosts statewide Forum to

identify and prioritize Network partnership agenda. Individuals and families identified the following needs in order of priority:

1. Guardianship/planning2. Transition3. Transportation4. Quality and consistency of support5. Education and Information6. Cross-disability Networking

ALTERNATIVES TO GUARDIANSHIP

• The Rhode Island legislature passed significant reforms to the guardianship law in 1992.

• The P&A facilitated the drafting of the reforms.

ALTERNATIVES TO GUARDIANSHIP

The reforms included:• Shifting from guardianship to limited guardianship;• Linking limited guardianship to decision-making

capacity;• Requiring those pursuing limited guardianship to

explore and rule out less restrictive alternatives before filing a petition; and,

ALTERNATIVES TO GUARDIANSHIP

• Confirming the right to counsel.

The reforms did not include a requirement that the Probate Courts monitor the guardianships.

ALTERNATIVES TO GUARDIANSHIPDespite the changes to the law:• Many guardianships are not limited;• Probate Courts continue to appoint guardians when

there are appropriate less restrictive alternatives to guardianship; and,

• There remains a common preconception that individuals with developmental disabilities cannot make decisions.

ALTERNATIVES TO GUARDIANSHIP

The DD partners individually and collectively work to change this by promoting decision-making autonomy in all their work.

ALTERNATIVES TO GUARDIANSHIP

Ongoing P&A activities include:• Representing clients to contest guardianship;• Educating families about alternatives to

guardianship; • Participating on the Probate Commission; and, • Conducting trainings on alternatives.

RI Developmental Disabilities Network publishes first edition of “Frontlines” newsletter. This issue concerns alternatives to guardianship.

2008

2008

• Alternatives to Guardianship conference held at Warwick, RI.• Disability Law Center provides legal and financial policy support to

Developmental Disabilities Council during and after attempt to move RIDDC into the Department of Elderly affairs.

• DLC drafted new state legislation for the Council to move out of state government, enacted effective July 1, 2008.

2009• Network collaborates on

sponsorship and presentation at RI Parent Information Network conference “Partnerships… Improving Transitions for Children and Youth with Special Health Care Needs and their Families”

• UCEDD and Developmental Disabilities Council team up on Inclusion Film series and Council joins the Universal Design in Learning team at Sherlock Center

UDL units can be found at http://www.ric.edu/sherlockcenter/udl.html

• RI Developmental Disabilities Network collaborates on Asset Development Conference: “Strategies and Resources to Assist People with Disabilities to Achieve Greater Economic Independence”

June 19, 2009

2009

Some Next Steps• Exploring collaboration

on investigations of abuse and neglect

• Planning for Developmental Disabilities Network project on restraint and seclusion begins

Proposed Partnership Activity for 2010Monitoring the Use of Restraint and Seclusion in

Elementary and Secondary Educationand

Promoting Best Practices for Behavioral Interventions

Restraint and Seclusion

Rhode Island regulation of restraint and seclusion (R/S):• 2000 – Children’s Right to Freedom from Restraint Act

(R.I.G.L. 42-72.9)applies to residential, inpatient and group home settings

• 2002 – Physical Restraint Regulations, Board of Regents for Elementary and Secondary Educationapplies to all students in publicly funded elementary and secondary education programs

Restraint and Seclusion

Consistent principles:• Use of de-escalation before use of R/S• Prevention of imminent risk of harm• Staff training and policy development• Record-keeping of each incident• Annual reporting to appropriate state licensing

agency

Restraint and Seclusion

National attention on R/S use in schools• National Disability Rights Network (NDRN) report –

“School is Not Supposed to Hurt” (January 2009)• Congressional Research Service report – “Use of

Seclusion and Restraint in Public Schools: The Legal Issues” (April 2009)

• GAO report (09-719T) – “Restraint and Seclusion: Selected Cases of Death and Abuse at Public and Private Schools and Treatment Centers”

Restraint and Seclusion

Monitoring School Use of Restraint and Seclusion in Rhode Island

• RI Dept. of Elementary and Secondary Education (RIDE) monitoring capacity– 3 year site visits– No data collection

• RIDLC receipt of redacted copies of R/S reports filed by schools with RIDE– Identify relevant data for collection– Identify compliance and trends

Restraint and Seclusion

Restraint and Seclusion

Possible Partners Collaboration on R/S• Identify relevant data for RIDE to collect• Promote the use of Positive Behavioral Interventions

and Supports (PBIS) as Best Practice, and • Participate in proposed Legislative Commission on

“Special Learning Environments for Students with Behavioral Challenges”

On the Front Burner• Partners collaborate to

support and plan for the future of the Accessible RI Guide

• Partners have full representation on DDD Incident Management Trends Analysis Committee