In this edition...Compliance Corner FAQ's, NEW resource on the DICLC page, data on spirituality practice and friendships, Connecticut DD Council Highlight on youth self-advocacy/healthcare transition and more...
Questions/comments or to submit content for consideration, contact
Angela Castillo-Epps   or call 202-506-5813, ext. 100.
FY 2017 Grant Award - FINAL REMINDER

FY 2017 Grant Award funds are currently in the liquidation period. The liquidation of funds must be completed by September 30, 2019 – this includes all draw-downs from the payment management system and payment of obligations. FY 2017 Grant award funds will be coded as expired on 10/1/2019. 
Frequently Asked Question about membership appointments
My Council needs a local, non-governmental organization representative, what is it and can you give me an example? 
A non-governmental organization (NGO) is a non-profit, citizen-based group that functions without government control, is non-religious and non-military. Local means community-based operating in the State or Territory where the Council is located. 

Examples of local non-governmental organizations serving on DD Councils are: Family Support Center, Brain Injury Association, Community Service Provider organization, Justice Center, etc. The non-governmental organization must be concerned with services for people with developmental disabilities
Frequently asked question about member attendance

Can a Council terminate a member or deem a Council member to have resigned their position for non-attendance if we have a by-law or policies that indicates such?

No, the Council does not have the authority to terminate a Council member’s appointment made by a Governor. The DD Act gives the authority for Council appointments and member rotation to the Governor. However, the Council can include information in their policies, procedures, or bylaws that indicates attendance expectations and consequences for non-attendance. 

The most frequent non-attendance consequences are: 1) Informing the Governor’s appointments office on non-attendance and requesting a replacement be appointed; 2) Having the Chair meet or talk with the member about attendance and urging increased participation and informing the member how to resign their membership (Recommendation: best practice resignations are made to the Governor with a copy to the Council). Website Updates
DICLC Resources Page

(1) Resources for young adults with developmental disabilities coming out as lesbian, gay or bisexual. “Coming Out”, Tips for Teachers/Service Providers on Supporting LGBTQ, Suggestions for Families/Allies/Peers and more.... Resource Link

(2) Disparities Resource Guide Series will assist Development Disabilities Councils, University Centers for Excellence in Developmental Disabilities and Protection and Advocacy Programs to: Address disparities experienced by identified populations of individuals with intellectual and developmental disabilities and their families; and Implement changes in policy and practice to mitigate and reduce such disparities. Resource Link

(3) Race, Equity and Disability provides structural ways that organizations can think about and advance diversity/equity “within” organizations and how to advocate for the same equities “outside” of organizations. RespectAbility and Kerrien Suarez, Executive Dir. of Equity in the Center. Webinar Link
>PDF file-AWAKE to WOKE to WORK: Building a Race Equity Culture.
culture icon
Culturally Competent DD Councils
It's a journey

What does the DD Act say?
CULTURALLY COMPETENT.—The term ‘‘culturally competent’’, used with respect to services, supports, or other assistance, means services, supports, or other assistance that is conducted or provided in a manner that is responsive to the beliefs, interpersonal styles, attitudes, language, and behaviors of individuals who are receiving the services, supports, or other assistance, and in a manner that has the greatest likelihood of ensuring their maximum participation in the program involved.
DD Act, Sec.102 (7)  

Cultural competence with regard to DD Councils requires innovative programs and initiatives to be provided in a manner that ensures people with developmental disabilities and their families from across cultures are welcome and meaningfully included in the process.

In the spirit of the DD Act, this includes DD Council members and staff that are committed to addressing the needs and concerns of people with the most significant disabilities from the most unserved and underserved populations. Engagement of and deep listening to diverse cultures is a must for this work. See the archived webinar, Culturally and Linguistically Competent Strategies to Engage Diverse Communities.

DD Councils are in many different places on their journey of cultural and linguistic competency (CLC) but research shows us that CLC starts with each individual. See the four question self-assessment below and for more information, click on Advancing Cultural and Linguistic Competence: Where is your Developmental Disabilities Council on the Journey?

Quick self-assessment (Things to think about)
(1) I feel it is my responsibility to learn about cultural communities other 
than my own.

(2) I understand that self‐advocacy:
> Is influenced by culture. 
> May have different meaning and practices among diverse individuals, families, and communities.  

(3) I advocate and support Council efforts to respond to cultural differences among the population of people who experience developmental disabilities and their families in my state, territory, or jurisdiction. 

(4) I am aware of racial and ethnic disparities experienced by individuals with developmental disabilities in my state, territory, or jurisdiction. 

Georgetown University National Center for Cultural Competence
If you missed the August 20th call on targeted disparity related to people who are Latino(a)(x) or Hispanic, click below for the "audio only" recording and materials. If you have state or territory specific questions related to targeted disparity or other CLC needs, contact or call 202-506-5813, ext. 100
Data "Nugget" from NCI
Spiritual Practice and Friendships
What do NCI Data Tell Us About Participation in Religious Services or Spiritual Practice and Having Friends Who Aren’t Staff or Family?

In the 2017-2018 In-Person Survey data collection cycle, 41% of respondents said that they attended a religious service or spiritual practice at least once in the past month.    Why does it matter?  

  • Engagement in religious services or spiritual practice is a way that many people find community, cultural identity and connections.
  • For people with intellectual and developmental disabilities (I/DD), faith communities can provide the same kind of welcome and belonging. 

To reinforce that aspiration, NCI data from the 2017-2018 In-Person Survey show that people who attended religious services or engaged in spiritual practices were more likely to have friends who were not family or paid staff – 81% compared to 75% of people who didn’t attend services or engaged in a spiritual practice. To download the full data brief and additional resources on this topic, click below.

Things to think about...
> If your Council is supporting the Charting the Life Course Framework , ensure there is a place for people to include faith-based information in their plans.

> Use this brief to educate case workers about the benefits of practicing spirituality for people with developmental disabilities.

> Facilitate a collaboration between service providers, community leaders, advocacy organizations (local or statewide) and faith-based leaders to develop ways to support people with developmental disabilities so they have choice and control over spiritual preferences.

> Faith is just one of many factors that influence culture. When applicable, share this information with cultural brokers, staff and others who are working on targeted disparity initiatives for the Council.
National Core Indicators (NCI)  is a collaborative effort between the National Association of State Directors of Developmental Disabilities ( NASDDDS ) and the Human Services Research Institute ( HSRI ).  
CT KASA - Increasing Youth Self-Advocacy in Health Care: National recognition and potential for replication

The Connecticut (CT) Council on Developmental Disabilities is fulfilling its objective to support youth advocates, families and providers with the important transition from adolescent to adult health care. One of the Council's most productive collaborations is with Kids As Self Advocates (KASA).

CT KASA teaches young people about their rights and how to change the systems that affect their lives. Activities include: monthly meetings; working on a personal development plan; representing the voice of young people with disabilities at public events; and group youth leadership projects.

CT KASA is a project of PATH, Parent-to-Parent/Family Voices of CT. The Council has allocated funds to PATH for the purpose of supporting the further development of CT KASA. Family Voices has recognized PATH on the national level for their development of CT KASA and has suggested the organization provide training to other states that are developing KASA groups.
" CT KASA has worked so very hard to accomplish all that it has. The youth are passionate individuals who just want to make a change in the world with this population. CT KASA is a very diverse group of 13-26 year-olds from different ethnic backgrounds and disabilities. Even their means of communication is diverse. We have some that use advanced TA devices to picture communications. It is very exciting to see them all grow into amazing self-advocates. All this could not happen without the support from Walt and the CT DDC ." Carmina Cirioli, Co-Executive Director of PATH Parent to Parent/Family Voice CT
In FY 2019, CT KASA produced a series of excellent videos for health care providers. The videos are raising awareness of the wants and needs of youth with disabilities as they enter the adult health care system. CT KASA leveraged additional funding for the videos from the Connecticut Office of Health Strategy. To view all of the videos, visit the Consumer Video Project Page .
Moving forward, the focus is on sustainability of CT KASA beyond Council funding. The Council is in discussions with CT KASA about possibly charging for its trainings and other services. For more information about these efforts, feel free to contact Walt Glomb at . For more information about CT KASA, visit the

Click below for just one of many videos on transitioning health care from the
Consumer Video Project Page! Emily's Story
DD Councils, this Council Highlight is your opportunity to share strategies, policy and initiative successes, resources and more. Contact Angela at or call 202-506-5813 by the 30th of each month to submit content for consideration.
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,