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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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Staff Listing A New Resource for Aging and Disability Communities is a new platform to share information and resources regarding the new Home and Community Based Settings (HCBS) rule and stay informed about steps each state is taking to comply with the new rule. The website is a project of the Association of University Centers on Disabilities, the National Association of Councils on Developmental Disabilities, and the National Disability Rights Network. It includes news and documents from states, advocacy resources, comment deadlines, and links to the final rule and official guidance. Send your news and resources to post to the site to


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 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.


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



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

New federal Medicaid rules for Home and Community Based Services (HCBS)

New federal Medicaid rules for Home and Community Based Services (HCBS) require states to review settings where people receive services.  The rules require Utah Medicaid to evaluate its level of compliance with the rules.  The evaluation and remediation process must be described in an HCBS Setting Transition Plan. 

You have the opportunity to share your thoughts about Utah's plan! To review the plan, visit the Utah Department of Health (DOH) website at: 

or you may call 801-538-6955 and request a hard copy of the Plan by mail.  Individuals may also review copies at local Area Agencies on Aging or at offices for the Department of Human Services throughout the state.   


Public comment on the plan will be accepted through December 1, 2014.

There are three ways to submit comments:

  • Mail:   
     Utah Department of Health
    Division of Medicaid & Health Financing
    Attn: HCBS Transition Planning Comments 
    PO BOX 143112
    Salt Lake City, UT 84114-3112
  • Fax:      801-323-1588

Congratulations to the 2014 Advocacy Award Winners!


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

The Council recognized these individuals during our Annual Meeting on September 9, 2014.

  • Self-Advocates of the Year-
    Robert Kilfoyle &
    Angelika Shumway
  • Legislator of the Year-
    Rep. Becky Edwards
  • Parent of the Year-
    Susan Harms
  • Media Representative of the Year-
    Brian Carlson
  • Educator of the Year-
    Dr. Natalie Williams
  • Adult Sibling of the Year-
    Kayla Hansen
  • Child Sibling of the Year-
    Mindy Braga
  • Employer of the Year-
    Brandi Proctor

    Thank you for all that you do!



Director of Public Policy, Dr. Troy Justesen, testified before the United States Senate on
June 24, 2014!

To listen to the hearing click here.

This summer is the 24th anniversary of the Americans with Disabilities Act (ADA) and the 15th anniversary of the US Supreme Court’s decision in Olmstead affirming that the ADA gives people with disabilities the right to choose where they live and how they live.  Today, people who want to live outside of nursing homes and other institutions can live in their communities.
In the Americans with Disabilities Act of 1990 (ADA), Congress described the isolation and segregation of individuals with disabilities as a serious and pervasive form of discrimination. 42 U.S.C. § 12101(a)(2), (5). Title II of the ADA, which proscribes discrimination in the provision of public services, specifies, inter alia, that no qualified individual with a disability shall, “by reason of such disability,” be excluded from participation in, or be denied the benefits of, a public entity’s services, programs, or activities. §12132. Congress instructed the Attorney General to issue regulations implementing Title II’s discrimination proscription. See §12134(a). One such regulation, known as the “integration regulation,” requires a “public entity [to] administer … programs … in the most integrated setting appropriate to the needs of qualified individuals with disabilities.” 28 CFR § 35.130(d). A further prescription, here called the “reasonable-modifications regulation,” requires public entities to “make reasonable modifications” to avoid “discrimination on the basis of disability,” but does not require measures that would “fundamentally alter” the nature of the entity’s programs. §35.130(b)(7).
The ADA stepped up earlier efforts in the Developmentally Disabled Assistance and Bill of Rights Act and the Rehabilitation Act of 1973 to secure opportunities for people with developmental disabilities to enjoy the benefits of community living. The ADA both requires all public entities to refrain from discrimination, see §12132, and specifically identifies unjustified “segregation” of persons with disabilities as a “for[m] of discrimination,” see §§12101(a)(2), 12101(a)(5). The identification of unjustified segregation as discrimination reflects two evident judgments: Institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life, cf., e.g., Allen v. Wright, 468 U.S. 737, 755; and institutional confinement severely diminishes individuals’ everyday life activities. Dissimilar treatment correspondingly exists in this key respect: In order to receive needed medical services, persons with mental disabilities must, because of those disabilities, relinquish participation in community life they could enjoy given reasonable accommodations, while persons without mental disabilities can receive the medical services they need without similar sacrifice.
Dr. Troy Justesen of the Council testified before the United States Senate on June 24, 2014 about the need for continued implementation of the ADA and the Olmstead decision.  He was specifically asked by the Senate’s Health, Education, Labor and Pensions Committee to appear and provide testimony.  Dr. Justesen has decades of experience in disability issues, health care, education, and government implementation of programs.



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?

Dr. 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



Bipartisan, Bicameral Group Announces Deal to Improve American Workforce Development System

After months of negotiations, leaders from House, Senate introduce Workforce Innovation and Opportunity Act

Current federal workforce laws, written in 1998, have been overdue for reauthorization for more than ten years

(Washington, D.C.) - May 21,2014 a bipartisan, bicameral group of lawmakers announced that they have reached a deal to improve the nation’s workforce development system through new legislation, the Workforce Innovation and Opportunity Act (WIOA).  The bill, which will now be considered by both the House and Senate, modernizes and improves existing federal workforce development programs, helps workers attain skills for 21st century jobs, and fosters the modern workforce that evolving American businesses rely on to compete. 

WIOA represents a compromise between the SKILLS Act (H.R. 803), which passed the House of Representatives in March of 2013 with bipartisan support, and the Workforce Investment Act of 2013 (S. 1356), which passed through the Senate Health, Education, Labor, and Pensions (HELP) Committee with a bipartisan vote of 18-3 in July of 2013.

“Access to training, education, and employment services opens doors to the middle class for workers and helps strengthen our economy. This bipartisan, bicameral reauthorization of the Workforce Investment Act will help ensure that all workers—including those with disabilities—can access these opportunities. It will provide better coordination and value to our workforce development system,” said Senator Tom Harkin (D-IA), who is Chairman of the Senate Health, Education, Labor, and Pensions (HELP) Committee. “This bill also makes groundbreaking changes that will raise prospects and expectations for Americans with disabilities, many of whomunder current laware shunted to segregated, subminimum wage settings without ever receiving the opportunities and skills to succeed in competitive, integrated employment. It will stem the flow of young people into segregated employment by requiring that they be given experience in integrated settings, and require state Vocational Rehabilitation programs to work with individuals to develop an individual employment plan and support them in integrated work settings. This bill truly represents the spirit of bipartisan compromise and cooperation, and I applaud my colleagues on the HELP Committee and on the Education and the Workforce Committee for their perseverance and commitment to updating this critical law. I urge senators on both sides of the aisle to support this bill when it comes up for a vote.”

“We can’t expect a modern workforce to succeed with an outdated job training system. The current workforce development system is broken with too much bureaucracy, too many inefficiencies, and too little accountability,” said Representative John Kline (R-MN), Chairman of the House Education and the Workforce Committee.  “The problems we face have been apparent for a long time and I am pleased we are moving toward adopting comprehensive reform that provides employers, workers, and taxpayers the job training solutions they deserve. I look forward to working with my colleagues in the House and Senate to send this agreement to the president’s desk without delay.”

"Last year the federal government spent more than $145 million in Tennessee through a maze of programs trying to help Tennesseans find work,”said Senator Lamar Alexander (R-TN), Ranking Member of the Senate Health, Education, Labor, and Pensions (HELP) Committee.  “Our legislation will simplify that maze, give governors and states more flexibility, and make it easier for Tennessee's 13 local workforce investment boards to match job seekers with the  skills employers are looking for.”  

“By revising the original Workforce Investment Act to support access to real-world education in fields that are in demand locally, this legislation will help more workers across the country find a good job or train for a new career. Similar to the legislation proposed by Reps. Tierney and Hinojosa earlier this Congress, this bill also makes job training programs more efficient and effective by requiring that states developed unified plans to streamline and better coordinate these services,” said Representative George Miller (D-CA), senior Democrat on the House Education and the Workforce Committee.  “By strengthening the workforce development system, we will increase accountability, promote innovation, and make it easier to track results, while helping put more Americans back to work. I'm proud to have worked with my colleagues on both sides of the aisle to develop this proposal and hope to see it signed into law this year.”

“Every year, federal workforce investments help millions of Americans get back to work, go back to school, and increase their skills for an economy that’s changing faster than ever, but for too long, we’ve been relying on workforce development programs written in the 1990s,” said Senator Patty Murray (D-WA), a senior member of the Senate Health, Education, Labor, and Pensions (HELP) Committee .  “This bipartisan, bicameral legislation will bring  federal worker programs into the 21st Century, give workers and students the resources they need to succeed, and foster a workforce that American businesses rely on to compete.  It’s a prime example of what’s possible when Republicans and Democrats in the House and Senate work together to write laws that help our economy grow.  I want to thank Senator Isakson, who co-authored the Senate reauthorization bill with me, and all of my colleagues, for their hard work and commitment to moving this forward.”

“This is a good example of what Congress can achieve when we all come to the table and work towards a compromise that respects the opinions of legislators on both sides of the aisle,” said Representative Virginia Foxx (R-NC), Chairman of the Subcommittee on Higher Education and the Workforce Training.  “This bill will eliminate fifteen duplicative programs, help the remaining programs better align worker education with available jobs and improve our ability to gauge how well the system is working as a whole.  I want to thank my colleagues in the House for passing the SKILLS Act and my colleagues in the Senate for considering this long overdue re-authorization of the Workforce Investment Act.”

“Workforce investment and training is critically important to help grow the American economy still recovering from recession and to bridge the widening skills gap separating thousands of unemployed workers from good-paying jobs,” said Senator Johnny Isakson (R-GA), a senior member of the Senate Health, Education, Labor, and Pensions (HELP) Committee.  “I thank Senator Murray and my colleagues for their bipartisan efforts on this legislation, and I look forward to getting this measure passed so we can get Americans back to work and meet the modern demands of businesses employees in a global environment.”

“This bipartisan agreement helps American workers get back on track by promoting sector strategies and career pathways that lead to good jobs and postsecondary education in our nation's public workforce training and adult education system.” said Representative Rubén Hinojosa (D-TX), the Ranking Member of the Subcommittee on Higher Education and the Workforce Training. “This bill makes certain that the connection between adult education, postsecondary education and the workforce is strengthened. We as a nation must be inclusive in our workforce, and this bill provides better services to workers young and old, with disabilities, and to those populations that have significant barriers to employment. It also addresses the need to improve services for English language learners that will ease their participation into our nation's workforce. I am pleased to see the progress we are making in the Senate and in the House and look forward to having this bill signed into law.”