In this edition, Updated ITACC Tools, DICLC on Healthcare/Mental Health, DD Act Final Rule definitions, DSP Data and more...

Questions/comments or to submit content for consideration, contact
Angela Castillo-Epps or call 202-506-5813, ext. 100.
Federal Financial Reports
Due date: by December 31, 2020
Three separate SF-425s are required. A final report for the FY 2018 grant, a second annual report for the FY 2019 grant, and a first annual report for the FY 2020 grant must be submitted. 
In a recent email from Sara Newell-Perez, Program Lead for DD Councils, please see the submission information below:
For FY20 grants and moving forward, all ACL mandatory grants will be entered into the Payment Management System per your Notice of Award. For previous years (FY19, FY18), you will need to submit those separately to the grants mailbox (as you have in previous years). As a reminder, the email to send those specific SF-425s to is: Please share with the appropriate fiscal staff and let me know if there are any questions. 
Program Performance Report (PPR)
Revised due date: March 31, 2021. 
Updated resources/tools
Updated tools and resources to help you review progress report narrative sections are available!
·        Tool - PPR Self-evaluation Narrative Rubric Website Updates
Program Performance Reports Page
Additional PPR Resources
This updated document written by ITACC summarizes the Annual PPR report requirements for a Council on Developmental Disabilities. Included in the document are: character limitations, descriptions of elements to include in each section, instructions, guidance and examples.

4 Year overview and 5-year analysis resource -This document has process information (with examples) on how to develop the 4-year overview item required for the FY 2020 PPR and the 5-year outcome analysis required for the FY 2021 PPR.

Council Director and Council Staff Pages

Five Year State Plan Page/State Plan Amendment/Update Page

Five Year State Plan Page
Comprehensive Review and Analysis
Comprehensive Review and Analysis Meeting (11/23/2020)
State Plan Development
Peer to Peer Meeting REMINDER!
The State Plan is due August 15, 2021

Save-the-Date: January 12, 2021 at 4:00 p.m. Eastern
ITACC is conducting a Technical Assistance Peer to Peer (P2P) meeting on developing Five-Year State Plan Goals and Objectives.

The group will share information, resources and strategies for developing “good” goals and the SMART method for developing objectives. (Specific, Measurable, Achievable, Realistic and Time phased).

There will also be time for questions and answers with experienced DD Council staff. This meeting will be recorded and posted to the website's Five Year State Plan page. More information to come!

For additional information on Goal and Objective Development, visit the Five Year State Plan page under the subheading, Five-Year Goals.

If you are looking for a resource and cannot find it on the page, contact Angela at or call 202-506-5813, ext. 100.
culture icon
The Importance of Studying the Intersects of Culture, Disability and Mental Health
As DD Councils develop their new Five-Year State Plans, it may be helpful to provide resources and information to members and staff about concepts important to the intersects of culture, disability and mental health. This information could include historical inequities of people unserved and underserved populations, which impact health disparities for overall healthcare, including mental health treatment. A health disparity can be defined as differences between social groups with regard to the availability of accessible healthcare resources, treatments, health outcomes such as death rates for certain diseases, illnesses and other factors. 
Even though mental health resources are more available than in years past, there is still a strong stigma associated with accessing mental health support. 
Stigma (a mark of disgrace associated with a particular circumstance, quality, or person) is present in all cultures. However, the stigma associated with mental health, significantly affects individuals and families who are disadvantaged, socially or economically.  

The Targeted Disparity * element in each DD Councils’ Five-Year State Plans provides an opportunity for Councils to address barriers associated with access, stigma, education, advocacy and more. DD Councils can work to increase knowledge of mental health interventions, develop skills among the I/DD population to advocate for individual health care needs and support policies that increase access to unserved and underserved individuals and families. NOTE: Councils can provide these same types of opportunities for other identified disparities as well.

Try the following ideas/resources for more information and education on this topic.
  • Create a space for DD Council staff and or members with lived experiences to share their stories.
  • Develop relationships with organizations that provide mental health interventions for diverse community members and invite them to share information at a virtual DD Council meeting or retreat. 
  • Share websites, webinars, blogs and stories, such as the ones listed below…

AUCD Website

Mental Health and Developmental Disabilities (MHDD) Training Center for webinars, stories and more

MHDD Hear Our Stories: Digital storytelling series highlights the lived experience of individuals with mental health conditions and developmental disabilities. This effort aims to raise awareness and educate the public on best practices when it comes to working with this population.

MHDD Plain Language Summary: Social Determinants Affecting the Health of the Hispanic/Latinx Community with Disabilities

MHDD Data: National Needs Assessment: Mental Health Services for People with Intellectual and Developmental Disabilities - National Summary of Results for States

In this episode of the MHDD Crossroads Podcast, Matt Wappett interviews Rylin Rodgers about her role at AUCD and policy issues relating to mental health and developmental disabilities

* The American Heritage Dictionary (2011) defined a disparity is the condition of being unequal, and a disparity as a noticeable difference.

If you have state/territory specific questions related to DICLC, contact Angela Castillo-Epps at
Disability Service Provider (DSP) Data/Survey

The Direct Support Workforce and COVID-19 National Survey Report 2020
The National Alliance of Direct Support Professionals (NADSP), in partnership with the Institute on Community Integration at the University of Minnesota (ICI), conducted a survey on the impact of COVID-19 on direct support professionals. Almost 9,000 direct support workers from the U.S. completed the survey between April 23-May 27, 2020 and at least one survey was received from every state.

Background on the survey:
The direct support workforce provides an array of critical supports making it possible for people with intellectual and developmental disabilities (I/DD) to live, work and thrive in their communities. These professionals perform multiple tasks, at any given time during the course of their work, which may be similar to those of teachers, nurses, psychologists, occupational therapists, physical therapists, counselors, dieticians, chauffeurs, personal trainers, and others. There is no Bureau of Labor Statistics occupational classification for direct support workers and they are often categorized with home health aides, personal care assistants, certified nurse assistants, and others. Providing home and community-based supports for people with IDD, however, requires specialized skills and competencies that are not reflected by the low wages due to underfunded Medicaid-reimbursed rates, limited access to benefits, and lack of respect afforded to this essential workforce.

How can your DD Council use this data?
  • The statistics can support policy advocacy for a coordinated funding plan to address the identified needs, such as wage increases and the oversight of a process that ensures people with I/DD and their families are directly involved in decisions that impact their health and healthcare.
  • Share data on the overwhelming turnover rates for the DSP workforce during the COVID-19 pandemic. Develop a storytelling campaign that exposes the dangers of people with I/DD who are not receiving care or are receiving inconsistent care during the COVID-19 pandemic.
  • Use this data to mobilize state, local, public and private organizations to educate and inform policymakers about quality assurance standards for DSPs. These standards are crucial and can include everything from recruitment to training to retention of Direct Support Professionals. 

There are many uses for this compelling survey report. The statistics are backed with actions on how to move this issue forward and impact change. Download the full report to share with others by clicking on the report link below.


To follow-up on the information gained from the survey above, a new survey is now available. This survey is for both DSPs and Frontline Supervisors who completed the first survey AND for those who did notThe purpose is to understand the impact of the COVID-19 pandemic on direct support professionals and identify the most effective ways to protect DSPs and the people they support.
DD Councils can share the survey with State/Territory Disability Provider Networks and partners. All responses to the survey are anonymous and state-specific results will be shared widely by March 2021. To learn more about who should and should not complete the survey, click on the button below.

Hewitt, A., Pettingell, S., Kramme, J., Smith, J., Dean, K., & Kleist, B. (2020). The Direct Support Workforce and COVID-19 National Survey Report 2020. Minneapolis: Institute on Community Integration, University of Minnesota.
DD Act Education
Developmental Disabilities Assistance and Bill of Rights Act of 2000

Final Rule, 2015 (Note, in the regulation, substitute the number 8 for 2 in the section titles)

In 2015, the Administration for Community Living released a final rule providing guidance on implementing the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD Act).

The rule strengthens and provides clarity for critical programs including Developmental Disabilities Councils. The Final Rule includes helpful definitions that can support the Five-Year State Plan development process. Section 1325.3 (formerly 1385.3) provides multiple definitions, including accessibility, self-determination, supported employment services and more. The definition for systemic change activities is important as it applies to many other areas of interest, such as transportation, housing, health related activities and others.

The term “systemic change activities” means a sustainable, transferable and replicable change in some aspect of service or support availability, design or delivery that promotes positive or meaningful outcomes for individuals with developmental disabilities and their families.

These activities are not “one time” advocacy efforts or investments. They are also not individual case work. Although other populations may benefit, systemic change needs to focus on the entire population of individuals with DD, per the DD Act.
The goal is to change or alter the way in which services are provided or are accessed by individuals and families. The change should also include the direct involvement of individuals and families, be implemented in a way that lasts and if applicable, be used as a model in other parts of the state or country. 

For example, a DD Council can develop an initiative to change a sheltered workshop’s service delivery system to a system that provides supported employment or self-employment services, within community settings. This change will take time and resources but if conducted properly, it can build the capacity of service providers to support positive employment outcomes for individuals for years to come. Another way that DD Councils impact employment is through their work with Employment First initiatives.

The Final rule definitions can be used to inform your DD Council's Five Year State Plan goals and objectives and to educate future grantees on terms that are crucial to services accessed by individuals and families. For more definitions, click on the Final Rule link below.
DD Council Highlight - Hawaii
Vaccine Support for Individuals with
Developmental Disabilities and Caregivers

How Councils, Organizations and Advocates came
together to Make a Difference

In August, the Hawaii DD Council (the Council) began its work to ensure individuals with intellectual and developmental disabilities (I/DD), their caregivers and the aging population were among the top tiers to receive COVID-19 screenings and any eventual vaccines. The Council used multiple strategies to move this important issue forward.

Relationship Building
Due to its relationship with the Executive Office on Aging, which oversees Hawaii's State Aging and Disability Resource Center (ADRC), the Council was invited to join the COVID-19 Response Assistance Field Team (CRAFT). Through its engagement with CRAFT, the Council contacted the Department of Health's lead epidemiologist. Through discussions, the Council informed the department about the importance of educating individuals about vaccines and that aging populations and individuals with I/DD should be prioritized once vaccines are ready for dissemination.

In September, the California's State Council on Developmental Disabilities alerted the Hawaii DD Council about the opportunity to share comments with the National Institutes of Health and the Centers for Disease Control and Prevention. The Council submitted comments to the Preliminary Framework for Equitable Allocation of COVID-19 Vaccine. (Part of a study commissioned by the National Institutes of Health and the Centers for Disease Control and Prevention). Submission of these comments allowed the Council to bring attention to not only individuals with I/DD but also their caregivers and family members regarding the COVID-19 vaccine.

Working in Collaboration to Educate Key Officials
The Council also decided that it would be good to have a list of important questions about vaccines (flu and COVID-19) to share with their lead officials to help them prepare for interviews. The Council needed assistance in determining the best questions to ask of an official and how to prompt thorough answers, so they turned to NACDD for help. NACDD drafted questions with suggested prompts for the Council to share. The questions and prompts were submitted to the Lt. Governor of Hawaii and the Mayor's office for Kauai. Both offices have responded to the Council. In a proclamation by the Governor, he identified support professionals/providers as essential workers and the Mayor has scheduled an interview with a self-advocate to gain further information and perspective.

Using partnerships to Reach the Community
In October, the Council partnered with the PHOCUSED Coalition (Protecting Hawaii's Ohana, Children, Under-served, Elderly, and Disabled) and the Hawaii Public Health Institute. Through its participation, the Council has brought awareness to coalition members and organizers about the importance of vaccines for people with I/DD and their support professionals and supported advocates to have a stronger voice on this important health issue. By using all the strategies above, the Council has engaged 14 different agencies to continue sharing this important vaccine message. To date, over 10,000 individuals have been reached statewide. For more information, contact Daintry Bartoldus at, Executive Director of the Hawaii DD Council.
To reach NACDD/ITACC staff, please feel free to contact:

Sheryl Matney Director of Technical Assistance
202-506-5813 ext. 148,

Angela Castillo-Epps Technical Assistance Specialist 
202-506-5813 ext. 100,