Advocacy

Using The Case for Inclusion Report

 

This report puts each state’s progress in serving individuals with intellectual and developmental disabilities into a national context. It is intended to help advocates and policymakers understand:

 

  1. How their state performs overall in serving individuals with intellectual and developmental disabilities;
  2. What services and outcomes need attention and improvement in their state; and
  3. Which states are top performers in key areas, so advocates and officials in those top-performing states can act as a resource for those States desiring to improve in key areas.

 

Advocates should use this information to educate other advocates, providers, families and individuals, policymakers and state administrations on key achievements and areas needing improvement within each state. The facts and figures can support policy reforms and frame debates about resource allocation for the ID/DD population. Advocates can also use the information to prioritize those areas that need the most immediate attention and use the facts to support adequate and ongoing funding to maintain high quality outcomes, eliminate waiting lists and close large institutions.

 

Elected officials should use this report as a guiding document on which issues in their community needs their time and attention and, possibly, additional resources or more inclusive state policies to improve outcomes for individuals with intellectual and developmental disabilities.

 

Those within federal and state administrations should use this report to put their work and accomplishments in context, and to chart a course for the next focus area in the quest for continuous improvement and improved quality of life. UCP also advocates that government agencies should replicate this data reporting in more detail at the state and county level to identify areas of excellence and to target critical issues needing attention.

 

 

How the Rankings Were Developed:

How the Rankings Were Developed:

The Case for Inclusion rankings were developed through a broad, data-driven effort. Demographic, cost, utilization, key data elements and outcomes statistics were assembled for all 50 States and the District of Columbia. Ninety-nine individual data elements from numerous governmental non-profit and advocacy organizations were reviewed. Dozens of Medicaid, disability and ID/DD policy experts were consulted as well as members of national advocacy and research organizations. They were asked to consider the attributes of top performing Medicaid programs, and offer opinions and recommendations on key data measures and outcomes.
To comprehensively determine the top-performing States, a weighted scoring methodology was developed. Thirty key outcome measures and data elements were selected and individually scored in five major categories on a total 100-point scale. If a person is living in the community, it is a key indicator of inclusion; therefore, the “Promoting Independence” category received half of all possible points.

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Weighting of Case for Inclusion Scores – 100 Total Possible Points

Category Measure Points Assigned
Promoting Independence Community-based % of Recipients with ID/DD on HCBS 9 50
% of ID/DD Expenditures on HCBS 7
% of ID/DD Expenditures on non-ICF-MR 8
Residential Services in the Community (includes all types) 1-3 residents – % 13
1-6 residents – % 11
16+ residents % (smaller %, higher rank) -4
% in Large State Facilities -3
NCI – % self-directed 2
Tracking Health, Safety & Quality of Life Quality Assurance – NCI Participation 0 14
NCI – Recent Dental Visit 2.8
NCI – Lonely Less than Half the Time 2.8
NCI – Not Scared in Own Home 2.8
NCI – Inclusion (sum of 4 measures) 2.8
NCI – Relationships Other than Staff and Family 2.8
Keeping Families Together Family Support per 100k 3 8
% in a Family Home 3
NCI – Child/Family Survey Participation 2
Promoting Productivity Has Medicaid Buy-In Program 2 12
Competitive Employment – % 4.0
Voc Rehab – Rehab Rate (finding a job) 2
Voc Rehab – Number of Hours Worked 2
Voc Rehab – Retain Job for One Year 2
Reaching Those in Need Waiting List – Average % Growth for Residential and HCBS 9 16
Individuals with ID/DD served per 100k of population 2
Ratio of Prevalence to Individuals served 2
Uses Federal Functional Definition for Eligibility or Broader 3
100

In general, the top-performing state for each measure was assigned the highest possible score in that category. The bottom-performing state was assigned a zero score in that category. All other States were apportioned accordingly based on their outcome between the top- and worst-performing.

As noted, most data is from 2014, but all data is the most recently available from credible national sources. Much of the data is self-reported by the States. These state rankings are a snapshot in time, and policy changes or reforms enacted or beginning in 2015 or later would not yet have an impact on the data.

When reviewing an individual state’s ranking, it is important to consider action taken since 2014, if any, to accurately understand both where that state was and where it is presently. Especially given the implementation of Home and Community Based Waivers. It is important to note that not all individuals with disabilities were considered, only those with intellectual and developmental disabilities. This limited the scope of the effort, allowing focus on subsequent initiatives of meaningful, achievable improvement.

A note of caution: Although more than 55 points separate the top performing state from the poorest performing state, 9 points separate the top 10 States, 15 points separate the top 25 States and only 11 points separate the middle 25 States. Therefore, minor changes in state policy or outcomes could significantly affect how a state ranks on future or past Case for Inclusion reports. This fact alone should also further incentivize state advocates and policy makers into action, as small and incremental changes continue to have a lasting impact on quality of life for individuals with disabilities in communities across the country.

 

Acknowledgements

A special thank you to Sheryl A. Larson, Senior Research Associate at the University of Minnesota’s Research and Training Center on Community Living, who again provided an advance copy of data tables for their 2016 report. It should be noted that the Research and Training Center’s data is drawn from their own surveys of state developmental disability directors but, when these directors do not or are not able to respond with the requested information, then data is drawn from Coleman Institute, Kaiser Family Foundation and American Health Care Association reports as well.

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