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About UDDC

The mission of the Utah DD Council is to be the state's leading source of critical innovative, and progressive information, advocacy, leadership and collaboration to enhance the lives of individuals with developmental disabilities.

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Birth to 5: Watch Me Thrive!- A National Initiative

U.S. Department of Education and U.S. Department of Health and Human Services (HHS) announced Birth to 5: Watch Me Thrive! – a National initiative to encourage developmental and behavioral screening for young children.This unprecedented multi-faceted initiative will assure that the wide range of adults who love, work, and care for young children are all on the same page and have an array of resources tailored to fit their needs and those of the families they serve.

This initiative encourages early childhood experts – including practitioners in early care and education, primary health care, early intervention, child welfare and mental health – to work together with children and their families. Early screenings check developmental progress and can uncover potential developmental delays. If a child’s screening result shows risk, families and providers will be in a better position to pursue more in-depth evaluation, which is the first step toward getting help for a child who might need it.

 Birth to 5: Watch Me Thrive! resources include: 

  • A list of research-based developmental screening tools appropriate for use across a wide range of settings;
  • Guides on how to use the screeners for a variety of audiences, from early learning teachers to doctors, social workers, and families;
  • Toolkits with resources and tip sheets;
  • Guidance on finding help at the local level; and
  • A screening passport that allows families to track a child’s screening history and results.

Visit the website for more information.
Click HERE.


Curious What Federal Funding for Disability Programs looks like?

Click here to review the federal levels for disability programs for FY 2012-2014.



Understanding Medicaid

Below are three proposals to address Medicaid expansion and how to cover people just a little above the poverty level.   You can read through the comparisons and become better informed. 

View Proposals


Expand Medicaid in Utah

The Legislative Coalition for People with Disabilities voted to support the expansion of Medicaid in Utah. Now you have an opportunity to help more than a hundred thousand fellow Utahns. One of the most important issues Utah faces is whether to include more lower-income adults in our state Medicaid program. Without this expansion, many Utahns will be left without an affordable way to get health care. Watch new 2-minute video below produced by Utah Health Policy Project, AARP, Voices for Utah Children and The Association of Community Health Centers to learn more about this critical issue.

Expand Medicaid in Utah Video



The Utah Developmental Disabilities Council would like to announce the 2013 Advocacy Award Winners!

Each year the Utah Developmental Disabilities Council likes to recognize outstanding people and their efforts on behalf of the disability community.

Legislator of the Year-
Senator Margaret Dayton, Orem 

Media Representative of the Year-
Fox 13's Big Budah, Salt Lake City

Self-Advocate of the Year-
Anna Lillquist, Park City

Educator of the Year-
Willis "Bill" Jensen, Orangeville

Employer of the Year-
Robert Sullivan, Salt Lake City

Parent of the Year-
Laura Anderson, North Salt Lake



The Sibling Support Project is Proud to Announce over 400 "Sibshops" Nationwide


The Sibling Support Project is an organization that provides resources to siblings of people with disabilities.  They believe that siblings play a very important and unique role as a life-long support for the family member with special needs.  A sibling may be the longest relationship a person will have, outlasting any care provider and the majority of parents.  Their aim is to provide peer support and information to siblings.  Their mission has gone global and are building community supports in England, Ireland, Japan, and New Zealand.  They also have service providers in all 50 states.  “Sibshops” are workshops for young siblings of people with disabilities where these children can meet other siblings in a recreational setting.  These workshops are designed to share the good and the bad experiences that accompany being a sibling to a person with a disability.  Being involved in Sibshops is not limited to children.  Adult siblings are encouraged to facilitate Sibshops and to members of their communities.  The Sibling Support Project is excited to announce that there are over 400 registered Sibshops in the US!  Follow the link below to find a Sibshop in your area!


Your Rights Under ADA

Offered in the Spring 2013 issue of Apostrophe is "A quick guide to federal laws covering people with disabilities." You can learn more about the information presented by visiting or by calling the ADA information line at 800-514-0301 (Voice) 800-514-0383 (TTY)



Affiliate Alert: Updated FMLA Language

The U.S. Department of Labor’s Wage and Hour Division has issued a new Administrator Interpretation that expands the Family and Medical Leave Act’s (FMLA) current language to include adult children who are unable to care for themselves because of a mental or physical disability and whose disabilities occurred before or after the age of 18.
The previous interpretation of the law was unclear as it applied to adult children with disabilities. This Interpretation also clarifies FMLA-protected leave for a parent is not dependent on the age of the adult child and the onset of their disability, and broadens the definition of “disability” to reflect the Americans with Disabilities Act Amendments Act (ADAAA).
Ultimately, this Interpretation means that more parents will be able to take FMLA- protected leave from their jobs to care for their adult children with disabilities.

Learn more about FMLA and this new Administrator Interpretation.


From Administration on Intellectual and Developmental Disabilities (AIDD) Commissioner, Sharon Lewis


Click here for full report

The Supporting Families Wingspread report, "Building a National Agenda for Supporting Families with a Member with Intellectual and Developmental Disabilities," is now available.

The report outlines recommendations developed in March 2011 by a group of diverse national and state disability leaders at the Johnson Foundation's Wingspread Conference Center.

To ensure that individuals with intellectual and developmental disabilities are fully integrated and included in our society and that the role of families is reflected in disability policy, stakeholders at this conference made recommendations involving the types of supports that families need and the advancement of a national agenda on supporting families.


What can you do?

The US Department of Labor has recently launched a new campaign encouraging youth with disabilities to pursue their career goals! "Because" follows real people with disabilities that have successfully reached a goal through hard work and the aid of mentors in their lives. The web site has several tools to help reach your goals and to spread awareness. Follow the link below and discover what you can do!


The Administration for Community Living website is home to a blog for sharing stories. Recently, Sharon Lewis, Commissioner of the Administration on Intellectual and Developmental Disabilities submitted a post to the blog. To read the Commissioner's post and others click here.



Employment and Housing Resources

Training Videos

and more...




Current Events

UDDC Spring Newsletter

The newsletter highlights legislative accomplishments and program updates

Read it by clicking HERE!




UDDC Annual Report Now Available!


You can now view the 2012-2013 Annual Report by following the link below. See what the Council was up to last year! Hard copies are available upon request by contacting the Council office.

2012-2013 Annual Report


2013 Annual Meeting Photo





Take Your Legislator to Work

In October, Senator Todd Weiler and Representative Becky Edwards shadowed Ethan Sandbeck while he completed his duties as Equipment Attendant for Olympic sports at University of Utah Athletics Department. 

Photo: Ethan Sandbeck with Senator Todd Weiler and Representative Becky Edwards

Read about Ethan's day in this Deseret News article by Marjorie Cortez here.

This month, two more legislators, Senator Luz Robles and Representative Jennifer Seelig, participated in "Take Your Legislator to Work" to learn more about the importance of disability employment. Senator Robles and Representative Seelig shadowed Goran Fejic as he completed his data entry duties for the Autism Waiver Team at Utah Division of Services for People with Disabilities (DSPD).

  Photo: Goran Fejic with Representative Seelig

“Goran is very detail oriented and takes great pride in being accurate,” said Tricia Jones-Parkin, DSPD Program Administrator. “He has caught errors and inconsistencies in various projects and is as integral part of our team.”  Fejic moved to the United States from Bosnia with his family when he was approximately 11 years old. He is fluent in both Bosnian and English and uses an iPad to communicate with others.

Photo: Fejic with Senator Robles

Kelly Holt of Price hosted Senator David Hinkins. Together they performed Kelly's janitorial duties at the Utah State University Eastern Campus. Sen. Hinkins was very engaged and even mopped the bathroom floor! Holt said, "I enjoyed the day with Sen. Hinkins and I hope more people do this in the future. I think it is important to let Governor Herbert know how hard we work and just what people with disabilities can do!"

Senator Hinkins mops at USU Eastern CampusPhoto: Senator Hinkins mops at USU- Eastern

The Utah Developmental Disabilities Council will collaborate with the Division of Services for People with Disabilities (DSPD) to encourage people with intellectual / developmental disabilities who are employed in competitive (earning minimum wage of $7.25 or more) individual jobs, to get involved  in our “Take Your Legislator to Work” project. Check out the informational video on YouTube!

Kelly Holt and Senator Hinkins
Photo: Kelly Holt and Sen. Hinkins


Talk to your legislators about the importance of supporting disability services

Find My Legislator Click to find your local Legislator.



New Mobile Apps Making Your Job Search Easier

The U.S. Department of Labor's CareerOneStop website now offers five mobile web applications you can use on your smart phone, tablet computer and other mobile device. These mobile apps can help you locate an American Job Center near you, search job listings and find local education and training programs.

Visit for more career planning and job search tools, as well as information about job accommodations that can help you succeed in the workplace.

Disability Programs: Taxes Matter

Don't miss this opportunity to weigh in. Many people with intellectual and developmental disabilities rely on Federal social insurance and safety net programs (like Medicaid and SSI) and on discretionary programs (like housing, education,and transportation) for their safety, and well being. These essential programs are entirely funded by tax dollars. Right now, tax policy, which determines the amount of money available to fund these programs, is a critically important issue for the disability community. Plans being developed to overhaul our tax system will determine how much funding is available for at least the next decade.
Senator Max Baucus (D-MT), the Chairman of the Senate Finance Committee, and Representative Dave Camp (R-MI), Chairman of the House Ways and Means Committee, have launched a website so YOU can tell THEM what YOU want THEM to do about tax reform. This website provides a unique opportunity for you to speak directly with two of the most influential people in America who are leading tax reform efforts. These members of Congress want to hear from you! Let us take this opportunity to tell Sen. Baucus and Rep. Camp exactly what we believe; that we need a tax system that raises sufficient revenues to fund essential supports, services, and benefits for people with disabilities.
Among the most poor Americans, people with disabilities are being called on to sacrifice their lifeline programs to reduce the National deficits. Programs for people with disabilities are already being cut and it is time to level the playing field and raise our voice! It is time to ask those who can afford to help, wealthy individuals and corporations, to pay their fair share. Take Action by clicking here to post a comment on the website! Sen. Baucus and Rep. want to hear what you have to say!
Suggested comments:

People with Intellectual and developmental disabilities want to live and work in the community and have access to services and support to allow that to happen. Tax and revenue policy should support adequate funding for these vital services and supports.

Further cuts to non-defense discretionary programs and any cuts to Social Security, Medicaid, and Medicare should be avoided by ensuring that the government raises sufficient revenue to support critical programs.

People with intellectual and developmental disabilities have disproportionately low income. Tax and revenue policy should support economic advancement for people with intellectual and developmental disabilities; reject policies that help only the most wealthy and raise revenues in a progressive way without increasing poverty or income inequality.

If you are a person with a disability or the parent of a person with a disability, please share information about your individual financial situation in your comment and tell how a reformed tax system would benefit you.
To view a letter that the UDDC submitted to the Congressmen regarding tax reform click here.



UDDC News You Can Use


Do you Have Higher-Education Questions, Comments, or Concerns?

Troy Justesen is the Council's point of contact for higher education and post-secondary career and technical issues. As the former Vice President of Salt Lake Community College, Troy has an extensive background in higher education. He has also worked for other colleges in Utah, North Carolina, and Virginia. Please contact Troy regarding any higher education issue at



Mini-Grant Funding Opportunity For Innovative Ideas That Help People With Developmental Disabilities

The Utah Developmental Disabilities Council recognizes the need to look at how unique ideas, programs, and changes to our existing system can help people with intellectual / developmental disabilities.

We are announcing an opportunity to award three $1,000.00 mini-grants during the Federal Fiscal Year (October 1, 2013 – September 30, 2014).  These mini-grants are reimbursable, so the expenses must be incurred for reimbursement to take place.

The Council is interested in supporting new ideas related to the goals of our 5-Year Plan - post-secondary education, employment, community supports and leadership development.  (For details of the Council’s 2012-2016 5-Year Plan go to the Council icon on this website). 

The application deadline is April 1, 2014.  Applications will specify how the funds will be used and outline specific outcomes relating to the relevant 5-Year Plan Goal.  There is no formal outline for the application, but proposals must include: a scope of work, a purpose and have objectives that can be measured with a projected completion date no later than September 15, 2014.   A final report will be required including the following:  # of individuals, family members, and other people impacted/served; matching funds; and the final outcomes and any other interesting conclusions as a result of the mini-grant.

The only other condition that applies to this funding opportunity is that by law funds cannot be used for personnel services, respite care or equipment, and will have a disability community oriented focus.  We are looking for fresh new ideas as opposed to continuation of existing programs.  The total value of the proposal should be $1,333.00 as the Council requires a 25 percent match of all funds so the $1,000.00 makes up three-fourths of the total proposal.  Matching funds can be made up of contributed funds, personnel time or other costs.  These funds/soft match must be documented and must come from non-federal funding sources and must be submitted with your request for reimbursement.  The Council has a format for documenting this information that will be provided upon award.

If more than one $1,000 mini-grant application is submitted to the Council, only one mini-grant will be chosen by the Council per submitter. 

Bring us your ideas so we can work together to help people with intellectual / developmental disabilities live full, independent and productive lives.


The Council’s Executive Committee or other appointed selection committee will review individual grant applications and select award winners according to the selection criteria determined in this policy.   There must be at least 3 people on the selection committee.  Since the disability community is so small, and potential conflict of interest might be a possibility, the selection committee members will be determined after all mini-grant applications are submitted and deemed eligible.  The selection committee will then be reviewed for potential conflicts of interest and anyone with a conflict will not be eligible to serve on the selection committee.   Council staff will support the committee and will not have a vote.


10 points
How well does the application support the Council’s 5-Year Plan?  
10 points
How well does the application explain the goals and outcomes?
5 points
Is the application a unique idea?
5 points
What impact will this money have on the disability community?

Once the committee selects a grant recipient, an award notice will be sent out with an outline final report prepared relevant specifically by Council staff relating to the activities and outcomes proposed in the grant application.   The award letter will specify the time frame for completion and the required reporting information for reimbursement (this uniquely prepared report determined by the grant application outcomes that will translate into the relevant data that the Council reports to AIDD).   Reimbursement and the final report must be submitted no later than September 15, 2014.


HHS strengthens community living options for older Americans and people with disabilities


The Administration for Community Living is pleased to share with you some great news.  The Centers for Medicare & Medicaid Services (CMS) issued a final rule to ensure that Medicaid’s home and community-based services programs provide full access to the benefits of community living and offer services in the most integrated settings. The rule, as part of the Affordable Care Act, supports the Department of Health and Human Services’ Community Living Initiative. This initiative was launched in 2009 to develop and implement innovative strategies to increase opportunities for Americans with disabilities and older adults to enjoy meaningful community living.
Under the final rule, Medicaid programs must support home and community-based settings that serve as an alternative to institutional care and that take into account the quality of individuals’ experiences. The final rule includes a transitional period for states to ensure that their programs meet the home and community-based services settings requirements.
“People with disabilities and older adults have a right to live, work, and participate in the greater community. HHS, through its Community Living Initiative, has been expanding and improving the community services necessary to make this a reality,” said HHS Secretary Kathleen Sebelius. “Today’s announcement will help ensure that all people participating in Medicaid home and community-based services programs have full access to the benefits of community living.”

The final rule includes the following enhancements to Medicaid HCBS:

  • Provides implementing regulations for new flexibilities enacted under the Affordable Care Act to offer expanded HCBS and to target services to specific populations;
  • Defines and describes the requirements for home and community-based settings;
  • Specifies that service planning must be developed through a person-centered planning process that reflects individual preferences and goals; and
  • Provides states with additional flexibilities when designing and administering HCBS waivers.

This rule is an important milestone in our efforts to maximize the opportunities for people with disabilities and older adults to enjoy the benefits of community living, and ACL looks forward to working with our colleagues, states, and stakeholders in its implementation.

The final rule is available on display at the Federal Register: Click Here

For more information regarding the Home and Community-Based Services available under Medicaid, please, Click Here