Rhode Island Families Organized for Reform Change and Empowerment

“Here for each other
Here for our families”

“We are an independent family organization focused on innovation and success for people of all abilities.”

In August of 2017 RI FORCE started to get the word out about a Café Conversation to be held in the fall.

We encouraged families to be part of an opportunity for collective voices to be heard and recognized as we develop our strategic plan of action to address critical issues facing RI families.

We shared this information at the BHDDH Community Forum in Coventry and distributed over 50 flyers as well as continue to be on the agenda for updates at BHDDH Community Forum events.

Subsequently our announcement dates of the Café Conversations were disseminated to key stakeholder families, posted on BHDDH and DD NEWS blog. There was also press coverage about the RI FORCE group in the Newport Daily News as well as on the DD NEWS blog.

Over 100 people either rsvp to participate in our café conversation or mentioned interest in being notified about future RI FORCE meetings and events. Over 50 families participated in our Café Conversations events.

RI FORCE is now offering an opportunity for those family members who were not able to attend the Café Conversations through this Survey Monkey. Please take some time out of your busy days to fill this survey out so we can add your voice to a Key Findings report RI FORCE will be publishing in February 2018.

Thank You!

RI FORCE Café Conversation survey:


please submit survey responses before 11:45 PM (EST) on 1/31/18.

Celebrating Developmental Disabilities Awareness Month

March is Developmental Disabilities Awareness MonthMarch is National Developmental Disabilities Awareness Month, an opportunity to celebrate the many contributions people with developmental disabilities make to our society.

The National Association of Councils on Developmental
Disabilities (NACDD), Association of University Centers on
Disabilities and National Disability Rights Network have
partnered to launch a social media campaign called “Life Side-by-Side” to highlight the many ways in which people with and without developmental disabilities come together to form strong, diverse communities.

The RI Developmental Disabilities Council (RIDDC) and the RI Cross Disability Coalition became involved with this project a year ago and shared some stories of people in RI. We are also involved this year and want to share even more success stories of individuals! So anyone who wants to join in, jump in and help us spread the word about Developmental Disabilities Awareness Month!

The campaign seeks to raise awareness about the inclusion of people with developmental disabilities in all facets of community life, tell the personal stories of people who live with a disability and how they are involved in their communities as well as the barriers that people with disabilities still sometimes face in connecting to their communities. Throughout the month, the Council and NACDD will be posting resources from various DD Council and states on social media including videos, blogs, toolkits and other shareable content.

You can be a part of this campaign by:

  • Submitting to the RI Developmental Disabilities Council (RIDDC) any stories (just a couple of short paragraphs), photos, videos, and/or blogs that we can share with NACDD about an individual with a disability who is involved and connected in the community
  • Download a “Life Side by Side” graphics to use on social media or in your e-mail signature.

Visit the #DDAwareness17 page for more information on the campaign.

Please email your story/information anytime in the next three weeks that you want to share as part of this national public awareness campaign.

For more information about the campaign or if you have any questions contact Sue Babin or Tanja Blicker-Ucran at RIDDC at 737-1238

Developmental Disabilities Community Forum Meetings Scheduled

the BHDDH crestThe Department of BHDDH, Division of Developmental Disabilities (DDD), will be holding two open community forums in February 2017. The first forum is specifically for individuals and families involved with self-directed supports and the second one for all other persons.

a graphic of word bubbles with questions like 'where?', 'what?', and 'how?'The Forums are typically held quarterly. They are an opportunity for people with disabilities, families, advocates, providers and other interested persons to meet with the director and leadership staff from the department, hear about updates on different policies, topics and various initiatives. It is also an opportunity for you to provide some feedback and ask questions.

Please save the following dates and times. You can click here to check for updates on the BHDDH website.

a graphic of a note with the words 'put this on your calendar!'February 6, 2017 – Self-Directed Individuals and their Families

4:00 – 6:00 PM
Cranston Senior Center
1070 Cranston Street
Cranston, RI

February 9, 2017 – All Other Individuals and Families

4:00 – 6:00 PM
North Providence Senior Center
2 Atlantic Blvd
North Providence, RI

Request for Information (RFI): Federal Government Requests Input on Timely and Quality Home and Community Based Services

Centers for Medicare & Medicaid Services logoMedicaid officials are looking for ways to increase access to Home and Community- Based Services (HCBS) for people with disabilities and they’re asking the public to provide comments and feedback.

In a notice published in the Federal Register this month, the Centers for Medicare & Medicaid Services (CMS), said it is seeking suggestions from stakeholders about reforms and policy changes to potentially pursue in order to grow availability of community-based services taking into account issues affecting beneficiary choice and control, program integrity, rate-setting, quality infrastructure, and the homecare workforce.

a graphic of the words 'we want your feedback' with a thumbs-up and thumbs-downCMS said it wants feedback from stakeholders on ways to further promote access to community options while continuing to ensure choice for those who prefer institutional care. Suggestions could include the way benefits are designed to how they are paid for.

Medicaid officials said they want to know what more can be done to provide services that promote the health/safety of beneficiaries with minimal fraud, waste and abuse.

CMS is also seeking feedback on ways to strengthen the home care workforce to ensure that providers are available for a growing number of individuals needing support.

CMS is accepting public comments through Jan. 9.

a graphic of the earth surrounded by people holding hands with the title 'Social Justice' and the words 'the full participation and inclusion of all people in society, together with the promotion and protection of their legal, civil, and human rights.'Click Here For More Information

RIDDC Sets Stage for Building a Family Advocacy Coalition in Rhode Island

The Rhode Island Developmental Disabilities Council’s (RIDDC) Annual Meeting took place on Saturday, October 15, 2016 at the Radisson Hotel in Warwick from 8:30 am-4:00 pm. The focus for the day was a discussion on strategies for building a statewide Family Advocacy Coalition in RI.

The Council invited Chas Moseley, US District Court Monitor for the RI Consent Decree, and Jennifer Wood, Deputy Secretary, RI Office of Health and Human Services (OHHS), to share their perspectives on building effective advocacy coalitions.

Consent Decree Opportunities

Chas Moseley commented that there are opportunities available through the Consent Decree for the Council and family groups to influence policy and practice in RI.

DOJ seal“The Consent Decree sets clear goals and expectations for the:

  • full inclusion of people with DD in society,
  • full access to supports people with disabilities need to beemployed in integrated, community jobs at competitive wages, and
  • full access to the assistance necessary to enable people toparticipate in the mainstream of community life.”

Chas Moseley at the RIDDC 2016 Annual MeetingChas mentioned that the Consent Decree requires the State to implement incentives to encourage transition to integrated settings through the use of public-private partnerships with people with developmental disabilities, families, employers and community organizations.

The State also has to develop and publicize its oversight process and mechanisms for people with disabilities, families, providers and advocates to file complaints and have their concerns heard in a timely manner.

The Consent Decree doesn’t create Coalitions to ensure that necessary advocacy takes place. Coalitions need to be developed by people with common interests/values.

advocacy works“Coalitions can be effective with careful planning; long-term commitment; research into best and promising practices; development of goals, plans and strategies; strategic meetings with key players who influence the design, funding and delivery of services; and individual action. It’s critical to be really clear on WHAT you want to accomplish!”

Chas suggested that the Coalition become a visible source for education and training which provides excellent opportunities for bringing people, ALL people together for collaboration, problem solving and providing advice and assistance. To build credibility it is important the Coalition be consistent and concise, identify key issues, use reliable data and “KNOW YOUR FACTS” to back up your points. Develop an “Agenda for Change” with a planned strategy that specifies a clear set of activities you want to accomplish.

Lastly Chas encouraged the Council to look at the data from the “National Core Indicators (NCI)” on the status/needs of families, ways to provide useful information to make a difference in their lives and the need for adequate crisis and health care supports. Another national resource is the “Supporting Families of individuals with intellectual disabilities Community of Practice” Initiative. There are now 16 states that are working on gaining consensus on issues related to supporting families at both the national and state level, that would inform practices and identify policies to build a sustainable system that results in improved supports to families.

Organizing for Change

Jennifer Wood at the RIDDC 2016 Annual MeetingJennifer Wood shared her thoughts on organizations that she is familiar with that were effective in terms of outcomes. People want to have a seat at the table.

You need to be clear on WHO you are, what is your PURPOSE and what are your GOALS.

She gave several examples of groups that have demonstrated effective organizational and leadership skills including the following:

  • Providence Student Union website bannerProvidence Student Union

    Young people freely unite to develop leadership skills, organize for ground-up improvements to their schools, and ultimately win a fair say in their education system. They began in 2010 with a series of Campaigns to improve their school, initially Hope High School. After achieving a number of school-based victories, the group then organized 6+ chapters across the Providence School District.

  • Olneyville Neighborhood Association (ONA)

    The ONA organizes low-income families, immigrants communities, and people of color in Olneyville and beyond to create a diverse, community-led movement that wins economic, social and political justice.

  • RI ACLU bannerThe RI American Civil Liberties Union (ACLU)

    The ACLU performs its work in three major ways: litigation, legislation and education. The cases that they take, the bills they lobby on and the public education activities that they sponsor, are designed to help preserve and protect the civil liberties of all Rhode Islanders against government infringement.

  • Young Voices

    For ten years, Young Voices has empowered more than 600 youth to achieve, succeed, and become confident civic leaders in their communities.

  • Marriage Equality RI (MERI)

    MERI’s consistent goal for years was to win access to marriage for all Rhode Island couples. The legislation had been introduced in the House every session since 1997 and finally passed in 2013, making RI the 10th State to legalize gay marriage.

  • Center for Disability Rights bannerCenter for Disability Rights (CDR)

    CDR partners with Disability Rights activists across the city, state, and country in order to achieve the goal of independence, integration, and civil rights of all people with disabilities. To achieve this goal, CDR uses a “pitchfork” strategy of advocacy, including Legislative, Legal, Media, Direct action, and Administrative.

advocacy toolkitJennifer gave a detailed roadmap of steps to take for being effective and creating positive change that the organizations previously mentioned utilized:

  • Collectively define a CLEAR MISSION, VISION and VALUES
  • Build Leadership Skills of people who are involved
  • Focus on ONE major issue and build a “campaign” around it for social change to show that it is the right thing to do…set and prioritize GOALS
  • Think about what is the CHANGE you want to create? Look at the Current State and the Future State (think of the concept of a Magic Wand and what you really want something to be)…“Culture Change”
  • Decide on a method of decision-making… Voting vs. Consensus
  • Set an AGENDA for Change with a clear set of activities/practices to change
  • Establish CREDIBILITY
  • Take ACTION to move the needle
  • Assess progress and then REPLAN.

“You’ve got to start somewhere. Success is the best way to keep people involved, motivated and willing to carry on the campaign. It’s important for people to understand what is in it for them.
There are a million reasons NOT to do something but only one reason why you SHOULD do it… YOU SHOULD DO IT.”

Next Steps

a sign reading: 'I always wondered why somebody didn't do something about that. Then I realized I AM SOMEBODY.'The RI Developmental Disabilities Council (RIDDC) will be scheduling meetings to discuss ideas for next steps for publicizing and establishing a Family Advocacy Coalition to strengthen the voices of families in RI.

If you would like to become involved, know families who may be interested in Family Advocacy or you want more information contact the Council at 401-737-1238 or email us at riddc@riddc.org.

Click here to download this story.

Click here to view/download the powerpoint from Chas Moseley.

Click here to view/download the powerpoint from Jennifer Wood.