BHDDH Using New Assessment Tool for Adults with Developmental Disabilities …”Supports Intensity Scale: SIS-A Adult Version”

the BHDDH crestthe AAIDD logo

Background Information

Supporting people in community settings is
recognized as the new way of thinking in the disabilities field. The American Association on Intellectual and Developmental Disabilities (AAIDD) has been developing tools and informational materials to advance this paradigm.

a photo of the Supports Intensity Scale coverThe Supports Intensity Scale (SIS), is an assessment tool developed by AAIDD and published in 2004. The SIS measures an individual’s support needs in personal, work-related, and social activities in order to identify and describe the types and intensity of the supports the person requires.

Approximately 23 States, including the RI State Division of Developmental
Disabilities (DDD), are currently using the SIS to assess the support needs of new individuals determined eligible for services and individuals currently receiving services.

The assessment is done during an interview with the individual and the people who know him/her well. Since 2011, RI has used the SIS assessment to determine the support needs for individuals receiving developmental disability services to live a successful and independent life, as possible. The SIS was chosen to replace an assessment used by DDD called the “Personal Capacities Inventory”, which some people thought was too subjective. The SIS was utilized by many other states and thought to be a more reliable instrument for assessment.

What Is the SIS-A?

a photo of the SIS-A coverThe SIS-A is a newer version of the SIS with some restructured and additional questions in the areas of behavioral and medical/health care needs. RI DDD started using the SIS-A this month. There have been numerous complaints by providers, advocates and families that the original SIS was not capturing a true picture of a person’s medical and behavioral needs.

What Does the SIS Measure?

The SIS-A measures support requirements in 57 life activities and 28 behavioral and medical areas. The assessment is done through an interview with the consumer, and those who know the person well.
SIS-A measures support needs in the areas of:

  • home living,a man with a pencil, checking off on a clipboard
  • community living,
  • lifelong learning,
  • employment,
  • health and safety,
  • social activities, and
  • protection and advocacy.

The Scale ranks each activity according to frequency (none, at least once a month, etc.), amount (none, less than 30 minutes, etc.), and type of support (monitoring, verbal gesturing, etc.).

What are Support Needs?

Support needs are the pattern and intensity of supports necessary for a person to successfully participate in activities linked with normative human functioning.The supports approach recognizes that individual needs change over time, and that supports must change as well. They must be developed and delivered in age-appropriate settings, with the understanding that, regardless of intellectual abilities or limitations, people should have the opportunity engage in activities and life experiences just like any other person.

“SUPPORTS” means the assistance and level of intensity a person needs to do something successfully… things needed to have a good life including friends/relationships, choices, home, employment or meaningful day activities and community activities. The SIS measures support needs to find out:

  • WHAT TYPE of support is needed
  • HOW OFTEN support is needed
  • HOW MUCH support is needed

“SUCCESS” means a level of performance, involvement, and participation in an activity that is comparable to that of typical adults without disabilities.

Statewide Informational Meeting

In addition to complaints regarding the questions within the original SIS format families, advocates and providers have had ongoing concerns about the interviewing process conducted by staff from DDD in terms of how questions have been asked and scored by DDD staff Interviewers. Some individuals with disabilities have been tested more than once with the SIS and have had very different results ultimately changing their Tier Authorization to a lower Funding Level.

Many family members, advocates and providers have described the SIS as a tool to cut funding. They have said DDD staff interviewers administering the questionnaire have been argumentative regarding how to answer questions on the SIS, show little respect for families, and sometimes appear determined to lower assessment scores.

Heather Mincey, DDD AdministratorHeather Mincey, DDD Administrator, has stated the State is working on addressing these concerns and has encouraged parents to file Appeals if they believe the SIS results for their family members are inaccurate – or if they have problems with a shortage of funds.

Appeals are ongoing and very time-consuming, especially for parents who have full time jobs, and for Plan Writers and staff from provider agencies who have to complete the required paperwork for the Appeal.

Mincey referred any further questions about the SIS to Donna Standish, State DDD SIS Supervisor, at 401-462-2628 or at Donna.Standish@bhddh.ri.gov

On November 17, 2016 BHDDH hosted a statewide informational meeting with an AAIDD representative to help individuals and families prepare for the change to the SIS-A and to answer questions. Complaints about the SIS that have continuously surfaced at various BHDDH public sessions throughout the year indicate there a lack of public confidence in the SIS. A number of family members expressed their serious concerns about their personal experiences with SIS interviews and results.

Several suggestions and safeguards were mentioned to help family members and providers feel more confident in the SIS process.


To read about these suggestions and more about the meeting, click here to check out Gina Macris’s article.

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.

RI Developmental Disabilities Council (RIDDC) to Focus on Building a Statewide Family Advocacy Coalition

The Rhode Island Developmental Disabilities Council (RIDDC) has scheduled its Annual Meeting for Saturday, October 15, 2016 at the Radisson Hotel in Warwick from 8:30 am-4:00 pm. The primary focus is to discuss strategies for building a statewide Family Advocacy Coalition in RI. The Council has invited two prominent individuals currently involved with oversight and implementation of RI’s 2014 Federal Consent Decree.

Charles Moseley - US District Court MonitorJennifer Wood - Deputy Secretary of the RI Office of Health and Human Services (OHHS)

Charles Moseley, the U.S. District Court Monitor for the RI Consent Decree, and Jennifer Wood, Deputy Secretary, RI Office of Health and Human Services (OHHS), are the Guest Speakers for the Council’s Annual Meeting. Chas Moseley and Jennifer Wood will speak about the Consent Decree, changes made and planned for in the DD system and within the State Department of BHDDH, and key steps to establish an effective statewide family advocacy coalition for individuals with developmental disabilities and their families in RI.


FOR MORE INFORMATION AND TO SEE THE MEETING AGENDA, CLICK HERE.

RI Developmental Disabilities Council Receives Approval from AIDD for New Five Year Plan FY 2017-2022

The RI Developmental Disabilities Council (RIDDC) recently received approval from the Administration on Intellectual and Developmental Disabilities (AIDD) to begin implementation of a new Five Year Plan beginning October 1, 2016-September 30, 2022.

The Council works within communities to promote change that encourages, inspires, makes it possible for individuals to create, pursue, and achieve lives that are personally satisfying… lives that are Meaningful, Productive, Healthy, and Safe.


For more information on the Goals/Objectives within the Five Year Plan, click here.

For more information on the planning process, activities of the various objectives or other aspects of the State Plan contact the Council at riddc@riddc.org or call the Council Office at 401-737-1238.