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About UDDC

“The Utah Developmental Disabilities Council will advocate, build capacity and encourage systems change to support people with disabilities and their families to fully and independently participate in their communities.”

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Disability and Aging Collaborative


The Disability and Aging Collaborative led by the National Council on Aging recently shared information on "Changing Nature of Family Caregiving: New Research and Policy implications." Follow this link to watch the slideshow.


 

HCBSadvocacy.org: A New Resource for Aging and Disability Communities

HCBSadvocacy.org 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 hcbsadvocacy@gmail.com.


 

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! 

www.siblingsupport.org


 

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 www.ada.gov 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 flexibility 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 flexibility 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!

www.whatcanyoudocampaign.org



 

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.


 

Newsletters

Employment and Housing Resources

Training Videos

and more...

 

 

 

Current Events

WEBSITE UNDER CONSTRUCTION!

 

The Council is getting a new website! Our current site will be periodically updated, but you can expect a new and improved website Summer 2016!



Now Accepting Nominations for 2016 Advocacy Awards

The UDDC is now accepting nominations for the 2016 Advocacy Awards presented in September 2016. Following the link below to access the application and instructions.

Click HERE for application.


UDDC 5-Year State Plan

The Utah Developmental Disabilities Council is hard at work forming the next
5-year state plan. Click the link below to review the progress and give us feedback.

2017-2021 5-Year State Plan Draft

Provide Feedback


 

UDDC 2015 Annual Report

See what the Council was up to last year! Hard copies are available upon request by contacting the Council office.

2014-2015 Annual Report


Congratulations to the 2015 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 in September 2015.

  • Self-Advocate of the Year-
    Rob Davis
  • Legislator of the Year-
    Sen. Todd Weiler
  • Parent of the Year-
    Emilee Wagner
  • Educator of the Year-
    LeOra Warner
  • Adult Sibling of the Year-
    Allison Stoker
  • Child Sibling of the Year-
    Megan Humphreys
  • Employer of the Year-
    Cory Dietz
  • Community Advocate of the Year-
    Joyce Dolcourt

    Thank you for all that you do!

 

What is the ABLE Act? 10 Things You Should Know About the ABLE Act and ABLE Accounts


The Utah Developmental Disabilities Council wants to thank Senator Hatch and Congressmen Stewart, Chaffetz, and Matheson for their support of the ABLE Act.  The President signed it in December.  The ABLE Act has the potential for many Utahns with disabilities and their families to save for costs related to their disability. 
The ABLE Act amends Section 529 of the Internal Revenue Service Code of 1986 to create tax-free savings accounts for individuals with disabilities. The statute aims to ease financial strains faced by individuals with disabilities by making tax-free savings accounts available to cover qualified expenses such as education, housing, and transportation. The ABLE Act supplements, but not supplants, benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources.
An ABLE account could fund a variety of essential expenses for individuals, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation. The ABLE Act provides individuals with disabilities the same types of flexible savings tools that all other Americans have through college savings accounts, health savings accounts, and individual retirement accounts. The legislation also contains Medicaid fraud protection against abuse and a Medicaid pay-back provision when the beneficiary passes away. It will eliminate barriers to work and saving by preventing dollars saved through ABLE accounts from counting against an individual’s eligibility for any federal benefits program.


ABLE Accounts:
1. What is an ABLE account?
ABLE Accounts, which are tax-advantaged savings accounts for individuals with disabilities and their families, will be created as a result of the passage of the ABLE Act of 2014. Income earned by the accounts would not be taxed. Contributions to the account made by any person (the account beneficiary, family and friends) would not be tax deductible.
2. Why the need for ABLE accounts?
Millions of individuals with disabilities and their families depend on a wide variety of public benefits for income, health care and food and housing assistance. Eligibility for these public benefits (SSI, SNAP, Medicaid) require meeting a means or resource test that limits eligibility to individuals to report more than $2,000 in cash savings, retirement funds and other items of significant value. To remain eligible for these public benefits, an individual must remain poor. For the first time in public policy, the ABLE Act recognizes the extra and significant costs of living with a disability. These include costs, related to raising a child with significant disabilities or a working age adult with disabilities, for accessible housing and transportation, personal assistance services, assistive technology and health care not covered by insurance, Medicaid or Medicare. 
For the first time, eligible individuals and families will be allowed to establish ABLE savings accounts that will not affect their eligibility for SSI, Medicaid and other public benefits. The legislation explains further that an ABLE account will, with private savings, "secure funding for disability-related expenses on behalf of designated beneficiaries with disabilities that will supplement, but not supplant, benefits provided through private insurance, Medicaid, SSI, the beneficiary's employment and other sources."
3. Am I eligible for an ABLE account?
Passage of legislation is a result of a series of compromises. The final version of the ABLE Act limits eligibility to individuals with significant disabilities with an age of onset of disability before turning 26 years of age. If you meet this criteria and are also receiving benefits already under SSI and/or SSDI, you are automatically eligible to establish an ABLE account. If you are not a recipient of SSI and/or SSDI, but still meet the age of onset disability requirement, you would still be eligible to open an ABLE account if you meet SSI criteria regarding significant functional limitations. The regulations to be written in 2015 by the Treasury Department will have to explain further the standard of proof and required medical documentation. You need not be under the age of 26 to be eligible for an ABLE account. You could be over the age of 26, but must have the documentation of disability that indicates age of onset before the age of 26.
4. Are there limits to how much money can be put in an ABLE account?
The total annual contributions by all participating individuals, including family and friends, is $14,000. The amount will be adjusted annually for inflation. Under current tax law, $14,000 is the maximum amount that individuals can make as a gift to someone else and not pay taxes (gift tax exclusion). The total limit over time that could be made to an ABLE account will be subject to the individual state and their limit for education-related 529 savings accounts. Many states have set this limit at more than $300,000 per plan. However, for individuals with disabilities who are recipients of SSI and Medicaid, the ABLE Act sets some further limitations. The first $100,000 in ABLE accounts would be exempted from the SSI $2,000 individual resource limit. If and when an ABLE account exceeds $100,000, the beneficiary would be suspended from eligibility for SSI benefits and no longer receive that monthly income. However, the beneficiary would continue to be eligible for Medicaid. States would be able to recoup some expenses through Medicaid upon the death of the beneficiary.
5. Which expenses are allowed by ABLE accounts?
A "qualified disability expense" means any expense related to the designated beneficiary as a result of living a life with disabilities. These include education, housing, transportation, employment training and support, assistive technology, personal support services, health care expenses, financial management and administrative services and other expenses which will be further described in regulations to be developed in 2015 by the Treasury Department.
6. Where do I go to open an ABLE account?
Each state is responsible for establishing and operating an ABLE program. If a state should choose not to establish its own program, the state may choose to contract with another state to still offer its eligible individuals with significant disabilities the opportunity to open an ABLE account.
Soon, the Secretary of the Department of Treasury will begin to develop regulations that will guide the states in terms of a) the information required to be presented to open an ABLE account; b) the documentation needed to meet the requirements of ABLE account eligibility for a person with a disability; and c) the definition details of "qualified disability expenses" and the documentation that will be needed for tax reporting. 
No accounts can be established until the regulations are finalized following a public comment period on proposed rules for program implementation. States will begin to accept applications to establish ABLE accounts before the end of 2015.
7. Can I have more than one ABLE account?
No. The ABLE Act limits the opportunity to one ABLE account per eligible individual. 
8. Will states offer options to invest the savings contributed to an ABLE account?
Like state 529 college savings plans, states are likely to offer qualified individuals and families multiple options to establish ABLE accounts with varied investment strategies. Each individual and family will need to project possible future needs and costs over time, and to assess their risk tolerance for possible future investment strategies to grow their savings. Account contributors or designated beneficiaries are limited, by the ABLE Act, to change the way their money is invested in the account up to two times per year.
9.   How many eligible individuals and families might benefit from establishing an ABLE account?
There are 58 million individuals with disabilities in the United States. To meet the definition of significant disability required by the legislation to be eligible to establish an ABLE account, the conservative number would be approximately 10 percent of the larger group, or 5.8 million individuals and families. Further analysis is needed to understand more fully the size of this market and more about their needs for new savings and investment products.
10.  How is an ABLE account different than a special needs or pooled trust?
An ABLE Account will provide more choice and control for the beneficiary and family. Cost of establishing an account will be considerably less than either a Special Needs Trust (SNT) or Pooled Income Trust. With an ABLE account, account owners will have the ability to control their funds and, if circumstances change, still have other options available to them. Determining which option is the most appropriate will depend upon individual circumstances. For many families, the ABLE account will be a significant and viable option in addition to, rather than instead of, a Trust program.

- See more at: http://www.ndss.org/Advocacy/Legislative-Agenda/Creating-an-Economic-Future-for-Individuals-with-Down-Syndrome/Achieving-a-Better-of-Life-Experience-ABLE-Act/#sthash.itkhWwyF.dpuf


 

 

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.



FINDING YOUR LEGISLATOR


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


UDDC News You Can Use

 

Council Chair, Deborah Bowman, Awarded the 2016 Utah School of Social Work's "Moving It Forward Social Justice Award" for Individual Advocacy!

Deborah Bowman has dedicated her life to serving the disability community as an extraordinary volunteer.  This is very personal for her as she has an adult child who was injured in a near-drowning accident at the age of 2.  The professionals at that time recommended that Deborah and her husband Kent just leave Heather in institutional care – she would be blind, unable to talk, walk.   Deborah bucked medical advice, (“I couldn’t leave my two year old baby in institutional care”) and she brought Heather home to the family.  After many years or hard work through long physical therapy sessions and the tender loving care of the family, today Heather is a vibrant young woman with significant disabilities interested in contributing and being a valued member or her community.  Heather’s quality of life had Deborah followed doctor’s recommendations would be dramatically different.

Through the years Deborah has had to become one of those ‘disability advocate moms’.  Well known to educators and professionals involved in the disability community, Deborah is the kind of mother that doesn’t take ‘no’ for an answer.  Deborah fought hard for inclusion for her daughter in school and explored unique and creative ideas including exploring Heather running her own balloon gift business while she was in post-high school!   Deborah is a tireless advocate pursuing all ways to give Heather a meaningful life.  To support Heather at home Deborah runs her own care provider business in their home – recruiting, hiring, training and managing Heather’s budget that provides caregiver staff through the Medicaid Community Supports Waiver.

And on top of the responsibility of day-to-day reality of living with a family member with a significant disabilities, Deborah uses her time and talents – volunteering practically full time – for the disability advocacy community. 

Currently Deborah is serving as a governor-appointed citizen member of the Utah Developmental Disabilities Council where she has served as the elected Chairperson for four years.  Deborah is active each legislative session working to insure that legislators understand the issues families and individuals with intellectual and developmental disabilities face every day.  Deborah willingly spends hours in Social Services Appropriations Committee meetings and testifies and educates individual legislators about the critical issues that impact people’s lives.

Deborah serves on numerous disability committees and work groups representing the family voice – including the employment first movement.  This push is to help people with intellectual disabilities have the opportunity to find appropriate jobs in the community so they are not segregated in workshop settings exclusively with other people with disabilities.   Real jobs and employment is one of the last and important civil rights movements within the disability community because so many people with disabilities live in poverty.   The long term support system paid for through Medicaid as well as medical health benefits in all practicality enslave people with disabilities into remaining in poverty to get the services and supports that they need.   Deborah is a tireless major family advocacy voice to improve the system as it currently stands.

For years Deborah has shared willingly of her time and talent with other family members in the disability peer family organization – Family to Family.  She has held various leadership roles as well as presented numerous trainings to share knowledge and empower families.  Deborah’s volunteer efforts have connected many people to resources and given hope to many families.  A common characteristic that happens when a family has a child with a significant disability is isolation.   Deborah has worked and continues to work to connect people with information and with other folks who will understand.

Deborah as a full time volunteer is always willing to go the extra mile to get things done.  She conceived of and put together the resources to start a drop-in respite home in Bountiful a number of years ago that operated for several years.  She helped create an after school program for adults with disabilities so that they would have social and learning opportunities called Campus Clubs.   In order to make it affordable for families, each year in conjunction with the Woods Cross High School drama department, the participants of Campus Clubs would put on a musical event and silent auction to raise money for scholarships.  Deborah was the driving force behind the success of Campus Clubs.

Deborah is always looking for ways to learn new ideas and to support system changes for people with disabilities.  She is very practical and down to earth and approachable.   Professionals and government agency people ask her to serve on numerous committees to represent the parent perspective.

Deborah is also very active in her Church.  She is a tireless, committed community member whose life is dedicated to serving others, especially those very vulnerable Utah citizens who cannot speak for themselves.



Mini-Grants Available!

The Council has three $1,000 Grants available. See the Grants tab for full information.


 

UDDC Newsletter

The newsletter highlights legislative accomplishments and program updates

Read it by clicking HERE!