The Heller School for Social Policy and Management
The Lurie Institute for Disability Policy

Extended Disability Data Dashboard FAQs

Below you find a set of extended responses to frequently asked questions, or FAQs, about our Disability Data Dashboards. These responses are grouped into several categories. Click on a section for more information:

 

Data Sources & Methodology

Dashboard Access, Functionality & Technical Features

Accessibility & Inclusion

Dashboard Application & Use Cases

Data Transparency, Reliability & Integration

International Context & Comparative Use

 

1. Data Sources & Methodology

Questions about where the data comes from, how it’s gathered, and how frequently it’s updated.

  • What are the primary sources of data used in the dashboards, and how frequently is the information updated?
    • For the Who are Disabled Parents? Dashboard, we used the 2018-2022 5-year ACS sample. For the Who Needs LTSS? Dashboard, we used the 2017-2021 5-year ACS sample. For the Who Receives Medicaid LTSS? Dashboard, we used data from the 2021 Transformed Medicaid Statistical Information System (T-MSIS). We hope to update the dashboards annually. For more thorough information, see FAQs at the bottom of each dashboard page.
  • How is the data being gathered since the federal budget cuts to research?
    • All data are from before federal restructuring. So far there have not been serious cuts to the American Community Survey by the Census Bureau.
  • What is the question set (i.e., for a survey?) used to gather the data on people with disabilities living in the community?
    • All measures of disability are imperfect. The approach the American Community Survey uses is to ask respondents if they have difficulty hearing, seeing, remembering/concentrating/making serious decisions, climbing stairs, bathing/dressing, doing errands/shopping/doctor’s office. In T-MSIS, we are using Medicaid claims data to identify Medicaid LTSS users in institutional and home and community settings. All Medicaid LTSS users presumably are people with disabilities as this is part of the functional eligibility requirements to receive services. 
  • What are the best resources and sites for data?
  • Are these data estimated or based on ACS data which is linked to folks who meet guidelines?
    • A: For the LTSS Dashboard, we round the numbers in this dashboard because these numbers are estimates of the number of people who need LTSS based on weighted survey data. For anyone interested in the raw estimates, standard errors, and confidence intervals, please contact us at CLEquity@brandeis.edu.
  • Does this system include information from the VA?
    • The ACS data are at the household level so where people get medical care shouldn’t affect the dashboard. These data also include people living in institutional settings. T-MSIS includes data for all Medicaid beneficiaries, but it does not include data or information from the VA. For those interested in VA information, it is possible to request VA Administrative data that has been linked to population health survey data from the National Center for Health Statistics (NCHS). There is also a data linkage between NCHS and T-MSIS, which can be integrated with the NCHS-VA linked data. However, we do not have access to this data.
  • Does the dashboard note which states may offer the Medicaid expansion population different or lesser HCBS options than the "traditional" HCBS population?
    • No, this is not something available in our dashboard data. However, this is an important issue since HCBS is largely optional and who can access HCBS and what type of services are available varies widely across states. Because states have flexibility over the eligibility criteria and scope of services they offer, access to HCBS for people eligible for Medicaid through Medicaid expansion pathways can be limited.
  • Can you expand on what you mean by issues with CMS data quality?
  • Is there a more straightforward way to count people as needing LTSS (e.g., “Do you need any kind of help…”) and have you compared that to your methods?
    • There are other ways to ask people if they need LTSSa; however, there is not another way in the data we have available. The ACS disability questions that we use are considered the gold standard in federal surveys. Further, the large, robust sample in the ACS allows us to look not only at counts of people needing LTSS at the national level but also at the state level, which is not possible with most other survey data.
  • On Michigan for HCBS it’s saying all categories are about 94%. Is Michigan’s data the problem?
    • There are a few concerns related to LTSS expenditure data in Michigan, but overall, Michigan’s LTSS data quality is pretty good. The vast majority of Medicaid LTSS users in Michigan receive services in home and community settings, so that is why the percentages of Medicaid LTSS users who are receiving HCBS are so high. You can read more about notes on data quality for specific states in this report.
  • For MA, since the race/ethnicity data from T-MSIS is unusable, might there be an opportunity to collaborate on a supplemental analysis using the Public Health Data Warehouse?
    • Please send teresanguyen@brandeis.edu an email and we can talk more!
  • I am guessing MI is in the same boat as MA. We too use a Data Warehouse.
    • Interestingly, the DQ Atlas shows that the quality of race and ethnicity data in the T-MSIS Analytic Files is “low concern” for MI and “unusable” for MA. Only 5% of Medicaid beneficiaries in Michigan are missing race and ethnicity data, whereas over 50% of Medicaid beneficiaries in Massachusetts are missing race and ethnicity data. 
  • Did you include VT? Our HCBS is through our 1115 global commitment waiver.
    • Yes, we did include VT.
  • I'm sorry if you explained this already. How is need determined? Are people not receiving for Medicaid/Medicare included in these numbers?
    • For the Who Needs LTSS? Dashboard, we used the self-care and independent living disability questions from the 2017-2021 5-year ACS sample. This includes all adults who report difficulties with bathing/dressing (self-care) or doing errands alone (independent living) regardless of whether they receive services or not. People who we consider to need LTSS does include people who receive Medicaid/Medicare, but it also includes people who do not. For the Who Receives Medicaid LTSS? Dashboard, we used data from the Transformed Medicaid Statistical Information System (T-MSIS), so all people receive Medicaid LTSS. This can include people who are dual eligible for both Medicaid and Medicare. For more thorough information, see FAQs at the bottom of each dashboard page.
  • I understand the data on disabled parents was self-reported, but how was the data regarding LTSS collected?
    • LTSS need is defined as anyone in the American Community Survey (ACS) who identified as having one or more of the following disabilities:
  1. Self-care Disability: Because of a physical, mental, or emotional condition, the person has serious difficulty dressing or bathing.
  2. Independent Living Disability: Because of a physical, mental, or emotional condition, the person has difficulty doing errands alone such as visiting a doctor’s office or shopping.

The ACS sample includes individuals living in their own home as well as individuals residing in institutional and non-institutional group quarters (nursing homes, group homes, assisted living, prisons, college dorms, homeless shelters, and other institutional settings).

  • LTSS encompasses two broad categories: institutional services and HCBS. In this analysis, institutional services include: 
  1. Nursing Facilities
  2. Intermediate Care Facilities for Individuals with Intellectual Disabilities
  3. Mental Health Facilities.  

We identified individuals receiving HCBS based on methods used by CMS, which use a combination of program and service categories to define HCBS in accordance with section 9817 of the American Rescue Plan Act of 2021. This definition of HCBS includes the following service categories:

1. Section 1915(c) Waiver Programs 
2. Section 1915(i) HCBS State Plan Option
3. Section 1915(j) Self-Directed Personal Assistance Services
4. Section 1915(k) Community First Choice
5. Program of All-Inclusive Care for the Elderly
6. Personal Care Services
7. Home Health Services
8. Rehabilitation Services
9. Case Management Services
10. Private Duty Nursing Services

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2. Dashboard Access, Functionality & Technical Features

Questions related to how to find the dashboard and the dashboard’s capabilities, interactivity, and usability.

    • Where would I find the dashboards?
    • Will the platform also be used as a depository?
      • The data is not available through the dashboard website. The American Community Survey (ACS) is publicly available. The Transformed Medicaid Statistical Information System (T-MSIS) data is administered by Medicaid. Researchers can request access to T-MSIS data through ResDAC. Data access is restricted because T-MSIS includes highly sensitive information. Researchers need to be covered under a Data Use Agreement and can only access the data through the secure Virtual Research Data Center monitored by CMS.
    • Is there an integrated way to get more information for the data being displayed on the dashboards/maps?
      • The chart feature may be helpful in this case. It reports rounded figures instead of barchart, which show percentages instead of number of people.
    • Will I be able to drill down enough to create data visualizations specific to my state?
      • You can filter by state and get summary statistics for just one state.
    • Can the dashboards be used for state reporting or on our website?
      • Yes! Please cite the dashboard. The citation for each dashboard is at the very bottom of each page under the FAQ.
    • Curious about maintenance required by a small team without a dedicated data employee?
      • Once the dashboards are created they can be ghosted by Microsoft indefinitely. Our team has scripts that can take future ACS and T-MSIS releases and update the source data for these dashboards. This is hard to do without a dedicated employee but this is the approach we took.
    • Are there plans to be able to filter by developmental disability?
      • The American Community Survey is focused more on being a large weighted national sample with broader questions than focusing on many specific disability types. The only question we have is “having difficulty remembering, concentrating, or making decisions”. This isn’t really about being diagnosed with IDD but a self assessment on cognitive difficulty. This is a major limitation of using the ACS for disability research. However, we are looking at disparities in who receives LTSS among adults with intellectual and developmental disabilities using the T-MSIS data and hope to include this information in the forthcoming Disparities tab of the Community Living dashboard.
    • Wonder if you have a dashboard with breakdown in ethnicities and languages as well as geographical areas on this dashboard?
      • You can filter by state and also by race/ethnicity categories in the top section of the dashboard. You can also look at the bar graphs or tables to see the percent of adults who need LTSS by language (English, Spanish, other) on the Who Needs LTSS? dashboard. We cannot breakdown the data any further than this due to small sample sizes and data limitations. 
    • How are we able to export all state data as a table?
      • Unfortunately this is not an option. We decided to use Power BI because it has, by far, the best accessibility options. One of the downsides is we can’t export the dashboard in tabular format.
    • Will gender eventually be included in addition to sex?
      • We unfortunately are limited by the questions the American Community Survey asks. The Census Bureau historically is very slow to change questions. If they add gender identity questions we will be able to use it, but there will be a several year delay because we need 5 years of the survey for statistical accuracy and precision, especially when looking intersectionally at marginalized populations. We can only do that because the ACS sample is so large.
    • Are you able to break down the data further by specific disability? For example, Deaf?
      • Unfortunately, we cannot break down the data further by specific disability types due to small sample sizes, especially when applying state and demographic filters, such that we could not provide reliable estimates.. The Parenting dataset uses the standard six broad disability questions from the ACS (vision, hearing, ambulatory, cognitive, self-care, and independent living disabilities).. For the LTSS dataset, we use only the self-care and independent living disability questions from the ACS to capture LTSS need.
    • Also, are there plans to broaden this database to show information by county in each state? 
  • Many of the over three thousand counties in the United States have a small number of people, let alone disabled people. The number of people gets even smaller when considering further filters, such as sex, race/ethnicity, or poverty status. Both to protect individuals’ identities and to maintain reliable estimates, we are not able to display data by county.
  •  
  • Is it possible to select multiple states and have the data aggregate?
    • No. This was an option but we decided against it to keep the dashboard simple for all users. We also anticipated that most users looking at state summary statistics would be at a single state level. The raw numbers are given of each group so you would be able to take those numbers from multiple states in a region and calculate counts or percentages manually.
  • Does this dashboard have data for Washington DC?
    • Yes, it is listed as District of Columbia.
  • Does the data show information about individuals with guardians?
    • For the Who are Disabled Parents? Dashboard, our definition of parents includes guardians who are not related to the children. For the Who Needs LTSS? Dashboard, ACS includes people with guardians in their surveys. For the Who Receives Medicaid LTSS? Dashboard, people with guardians are included in the data. However, we do not have any specific information about guardianship or conservatorship status in the data, so we are unable to show this in the dashboards.
  • Questions about expanding the dashboard:

I’m interested in education data points as they intersect with the data in these dashboards. Is there any way to filter to include education levels or any other education-related information? 

Are there any data points related to higher education? 

For parents with disabilities, could you also provide a selection by age ranges of the children: 0 to 3, 4–6, etc.?

Do you have data on housing?

  • We tried to pick categories that would be most useful to researchers and policy makers. We will take these requests into consideration as we develop the update for next year.
  • Will you expand your dashboard to include Early Intervention services for families of children aged Zero to Three with developmental delays and disabilities?
    • Our focus is primarily on parents with disabilities. However, you may find helpful information through ECTA, Zero to Three, and you can check out our webinar on EI.
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3. Accessibility & Inclusion

Questions focused on accessibility for users with different needs.

  • Does the dashboards include social media scripts, plain-language infographics or summaries, and video versions of the data?
  • Have you made any features in your dashboard for people with dyscalculia?
    • A lot of consideration was made into making the dashboard accessible to people with IDD and learning disabilities. Some of the things we’ve done is make a graphical version and a text table version, make all bars out of the same scale, and make different categories different colors.
  • What criteria did you use to ensure that the dashboard is easily accessible?
    • We found a surprisingly limited amount of information about making interactive, digital dashboards more accessible. We relied on consultants with a variety of disability types to help us design and test our dashboard’s accessibility (screen reader compatibility, contrast for color blindness, ease of use). One of the things we learned is when it comes to accessibility, you can’t build a dashboard and change it to be accessible. You have to design the dashboard from the beginning to be accessible. If you have any suggestions, please email us at Lurie@brandeis.edu.
  • How to make them accessible to screen readers?
    • After a lot of trial and error we found Power BI to have by far the best screen reader compatibility. You must build the dashboard to be accessible from the start.
  • Does the dashboard include information on preferred language such as ASL?
    • The ACS only asks questions about spoken languages.
  • What is the universality of the dashboard for any disability?
    • In the Community Living dashboard, we focus on people who need LTSS or receive Medicaid LTSS, which includes people with a wide range of disability types. We use the ACS questions about difficulties with self-care (bathing and dressing) and independent living (running errands alone) to approximate who would benefit from long-term services and supports that can assist with activities of daily living (such as bathing and dressing) and instrumental activities of daily living (such as running errands). However, people who need these types of services and supports could have any type of disability. 
    • In the Disabled Parent dashboard, we use the ACS dataset, which is known to undercount people with disabilities, particularly people with mental health or intellectual disabilities, for example. Disabled parents may also be reluctant to share parental status with the Census Bureau due to fear and stigma. Additionally, this data is unable to capture those parents who do not co-reside with their minor children. For all of these reasons, it is likely that the true number of parents with disabilities is higher than the reported counts in the dashboard.

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4. Dashboard Application & Use Cases

Questions about how the dashboard is or can be used in real-world contexts.

    • How can we use the data appropriately for applying dashboards to grant proposal writing?
      • You are welcome to use the data to highlight the need for resources for disabled people in your state! Please cite the dashboard. The citation for each dashboard is at the very bottom of each page under the FAQ.
    • Are there specific recommended policy areas the dashboards could be especially useful to promote advancements?
  • We hope that the Parenting dashboard can be used by self-advocates, policy makers, disability advocacy organizations, and others to support disabled parents and their families.  The parenting dashboard includes two maps which display state-based supportive and discriminatory laws pertaining to disabled parents.  The data from the ACS can be used for advocates who seek legislative changes in their states.   We also hope that the Community Living dashboard can be used by self-advocates, policymakers, disability advocacy organizations, and others interested in LTSS to evaluate HCBS needs in their state or region.
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  • Do you have any examples of successful policy making/advocacy using the data referenced here in the webinar?
    • Justice in Aging is a national organization that uses the power of law to advance policies and resources that address the unmet needs of low-income older adults. As part of these efforts, Justice in Aging participates in the Disability and Aging Collaborative (DAC), a coalition of aging and disability advocates working to strengthen long-term services and supports (LTSS) policy at the federal level. Coalition members have been using the data dashboard to educate lawmakers about LTSS use and unmet need among their constituents and as a critical resource in protecting Medicaid from harmful policy proposals, including proposed budget cuts, that would jeopardize access to Medicaid HCBS.
  • Couple you provide more examples of how to use the data to advocate? Have you captured data about the uses of the dashboard? I'm curious to see how the dashboard has fared among users. Thanks!
    • We are still compiling examples of how advocacy & service organizations have used the dashboard. 
  • How would this information be useful to advocate for higher rates for services or against Medicaid cuts?

How can the Dashboard be integrated with adult services, reports, and data management?

  • You are welcome to take screenshots of the graphs or use the charts to get more exact numbers to illustrate the need for resources in your state.
  • Advice on accessing any data on disability in tribal communities and emergency preparedness?
    • Unfortunately, we cannot filter by county due to privacy concerns, limiting our ability to filter to only tribal communities. The closest alternative is to select American Indian/ Alaska Native in the race/ethnicity filter.
  • In light of current reconciliation bill in Senate, how will it impact Medicaid-funded community-based supports to people with disabilities?
    • Recent funding cuts illustrate the need for timely data to support ongoing advocacy efforts.
  • How can we better coordinate efforts for letter writing, and contacting key federal legislators?
    • You should contact your local CIL or other advocacy organizations!
  • I have a disability and would be counted as needing LTSS due to difficulty doing errands, but I rely on natural supports. Is there a better way to count people like me?
    • Given the current data available in the ACS, we are not able to tell what kinds of supports people rely on. We count people with LTSS needs based on the two questions about difficulties with bathing/dressing and/or doing errands alone because these are the only two questions related to this topic that are available in the ACS. We recognize that LTSS includes a wide variety of services and supports beyond just personal care assistance, such as assistive technology, home or vehicle modifications, durable medical equipment, home delivered meals, family caregiving supports, etc. In our definition of LTSS need, we consider someone to be a person with LTSS needs even if they have the supports they need in place. We are not measuring unmet needs for LTSS since we do not have this data. Rather, we are using this data to give a broad estimate of the number of people who rely on or require some kind of services and supports to meet their needs or perform daily living activities. This would include people receiving natural supports, informal caregiving, formal Medicaid LTSS, etc. as well as people who need services and supports but aren’t receiving them.
  • I did a thesis research a long time ago that PCAs can’t help with babycare in Massachusetts. How do disabled parents who are quadriplegic manage babycare?
    • Based on anecdotal evidence in our efforts to assist disabled parents who contact us for resources, many parents report arranging informal support through family and friends. 
  • Does the parent dashboard capture parents with disabilities who are co-residing with children over 18 if the children are disabled?
    • This dataset only includes parents of minor children.
  • Can you give an example of legislation that supports disabled parents?
  • I'm interested in finding data about people with complex support needs — Medical, physical, and/or Behavioral.
    • Unfortunately the American Community Survey only asks about having difficulty with six specific things. T-MSIS data includes payment information and claims for healthcare and service utilization for all Medicaid beneficiaries. We use this data to identify Medicaid LTSS users, many of whom have complex support needs. This Medicaid webpage on “Improving Care for Medicaid Beneficiaries with Complex Care Needs and High Costs” may be a helpful place to start in terms of looking for additional information on this topic.
  • With ongoing policy changes, do you expect restrictions on access to disability data?

With policy and political changes in the federal government, will there be any impact on your ability to update this data?

  • It’s hard to know at the point of writing this. As of now there have not been cuts to the American Community Survey by the Census Bureau. One concern is that certain groups of people, such as immigrants, are reluctant to participate in these surveys which biases estimates. This is an issue that affects data from after 2016. Most national surveys are weighted to the decennial  Census (2000, 2010, etc.), so if these estimates are biased it biases all national surveys for a decade. This is a major limitation of national weighted data. This also has important policy implications since this data is used for a variety of policy and planning purposes, such as the distribution of federal resources and redrawing of congressional districts. 
  • Can the current info in the dashboard serve as a baseline for changes that will occur with the Reconciliation Act passing?
    • Yes, the current dashboard can tell us about the population in 2017-2021 and can be used to compare to the population after changes have been made.
  • How is the accuracy of this LTSS data going to be impacted now that significant cuts are being made to Medicaid?
    • Our access to this data has not been affected by changes to Medicaid, but the numbers may change in future releases. It is not known at this time whether there will be an impact on the collection of T-MSIS data, but to our knowledge as of this time, CMS is continuing to work with states to improve the accuracy of existing T-MSIS data, and states are still required to report their data to CMS. 
  • Besides number of people covered, will the data address quality of care (e.g., HCBS waiver cuts, waitlists)?
    • T-MSIS is limited in terms of data about quality of care, so we unfortunately are not able to provide information on waiver cuts, waitlists, etc. This is because T-MSIS data comes from claims that providers submit when you see a doctor or receive services, for example. Claims data are originally designed for billing purposes, so they don’t include information like this related to policies.
  • IDEA Part C could potentially collaborate with the Parents with Disabilities Dashboard. This is a major need for Part C ECI programs around the US.
    • Please email miriamheyman@brandeis.edu.

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5. Data Transparency, Reliability & Integration

Questions about the engineering behind the dashboard.

  • How do you ensure transparency and reliability when your dashboards incorporate different data sources?
    • Each of our current dashboards use a separate data source (either American Community Survey data or T-MSIS data). We are not directly comparing the American Community Survey and T-MSIS data since they are different data sources with separate samples/populations. The Who Needs LTSS? dashboard uses a sample of adults from the ACS data and is weighted to be representative of the U.S. adult population. The Who Receives Medicaid LTSS? dashboard uses T-MSIS data and includes the entire population of adult Medicaid beneficiaries. We ensure transparency by explaining where the data comes from and how variables are measured, and address data limitations. We suppress data in the dashboards when we cannot produce statistically reliable estimates using the ACS data due to small sample sizes, for example. We also exclude states in the Who Receives Medicaid LTSS? dashboard in cases where the T-MSIS data quality is unreliable.
  • How much of the analysis is automated? Could it be deployed to different data sets?
    • We have written code that we can use to conduct statistical analyses for different years of the same datasets, but it is specific to the datasets we use in the dashboard and could not be deployed to different datasets. The analyses for the different dashboards (Parents with Disabilities, Who Needs LTSS?, and Who Receives LTSS?) all have unique analyses. We have created datasets in a particular format for each one in order to input the data into the dashboards.
  • How to correlate state and federal data when they use differing data sets?
    • This will be part of our next dashboard, Disparities in LTSS, which is coming soon.
  • How to get state-specific data?
    • You can filter by state by using the state drop down menu.
  • What improvements/increases in data would you need in AL & MS to collect LTSS data? Have you worked with P&As there?
    • A: Great question — please email teresanguyen@brandeis.edu to chat more. This specific issue is unique to the 2021 T-MSIS. Our hope is that with continued advocacy, T-MSIS data quality will continue to improve over time, and we will not have to exclude states.
  • For MA, can we collaborate on using the Public Health Data Warehouse due to T-MSIS race/ethnicity data issues?
  • I would love to have any guides or TA resources for addressing the 14 states mentioned with data concerns for Race & Ethnicity.  I understand this issue, but am unsure how to resolve it for the states where race & ethnicity may be less homogeneous.  I'm from NJ and we're a HIGHLY diverse state.  I'm aware that the census had a much more expansive collection tool they're working on, but also appreciate the complexities of balancing how specific to get and finding some kind of a sweet spot.  Would love to advocate for this in my state, just unsure how to go about it.
  • Is it possible to get the general or basic state demographics? For example, the dashboard shows the % of Hispanic people who need LTSS and the % who get LTSS, but I don't see the % of my state's population that is Hispanic. Knowing that might suggest racial disparities in self-reporting or receiving services.
    • State-level demographics, including race and ethnicity, are available on the U.S. Census Bureau website. This link takes you to interactive tables using the same American Community Survey data that we use in the dashboard. In the table you can scroll down to RACE or HISPANIC OR LATINO, for example, and then scroll over to see the racial and ethnic distribution among all people within each state. The comparison is not perfect since we only focus on adults ages 18+ in the dashboard, but it would still provide a rough comparison that could be suggestive of disparities.

6. International Context & Comparative Use

Questions that explore global contexts

  • Have you worked internationally to help other nations develop similar initiatives?
    • We haven’t been involved in any international initiatives to develop other dashboards; however, we do support the International Consortium of Research on Parents, Parenting, and Pregnancy with Disabilities.  We also developed a compendium of international data sets that contain indicators of both parenting status and disability.  Researchers could use one or more of these data sets to create a dashboard.   If you are interested in collaborating, please email miriamheyman@brandeis.edu.

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