Monthly Archives: October 2011

Medicaid changes require your comments

Medicaid eligibility NPRM comments

We have just learned of a serious problem with a CMS Notice of Proposed Rule-Making (NPRM) under the Affordable Care Act (ACA)  that could harm people with disabilities – described below. The link above is a comment letter that the Consortium for Citizens with Disabilities (of which NACDD is a member) is submitting in response.  Since the number of organizations/people who submit comments to CMS is very important, we hope that you will submit a comment by the deadline of Monday, October 31 at 5:00 p.m. and ask others – whether individuals or groups —  to do so too.

Your comment could be as simple as “We support the comments submitted by the Consortium for Citizens with Disabilities.”  Or you could cut and paste all or part of the CCD comments or submit your own.  TO COMMENT  please go to  click submit comments, search for CMS-2349-P and when it comes up hit submit a comment and type your message in the comment box.

The NPRM addresses a good provision of the ACA that expands Medicaid eligibility for adults as of 2014 and reflects CMS’ effort to create a streamlined application process for Medicaid.  It may be found at  This is a complicated regulation and I too wish there were more time to review and digest it.  In any case, CCD’s thought comments ensure that our concerns are submitted to CMS.

The serious concern is that many people with disabilities who now are eligible for Medicaid home and community-based services but not eligible for Supplemental Security Income (SSI) would lose access to home and community based services (HCBS), Medicaid Buy-In and other long term services and supports if the proposed rule would go into effect.  Some people with disabilities may not be able to access or retain some of the services and supports they require to live and work in the community if the NPRM is not revised.

Thank you for whatever you can do to submit and generate comments by Monday, October 31, at 5:00 pm.

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Home Depot helps military families

The Home Depot Foundation is running a special program to commemorate the
        10th anniversary of 9/11. From 11 Sep 11 through Veteran’s Day (11 Nov 11),
        Home Depot is offering to conduct work projects on military
        members’ Personal homes.

        Home Depot will provide the materials, labor and contractors. Projects will
        include repairs and installations. If there are any questions, please make
        contact through the website below.
        The priority is as follows:

        – Wounded warriors returning from combat & disabled veterans
        – Members returning from deployment
        – Members with special needs (either themselves or family members)
        – All others

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Association of Maternal and Child Health Programs at risk

In the next few weeks, Congress will be considering additional cuts to critical discretionary health programs for women, children and families that could exceed $1 billion in 2012 alone. Additionally, the Select Committee on Deficit Reduction (Super Committee) is meeting today to discuss further cuts to the discretionary portion of the federal budget that funds these programs.  Elected officials need to hear clearly that these cuts are unacceptable.  In accordance with your organization’s rules on advocacy, please take these three, easy steps now:
1.     Step one: Dial (202) 224-3121 for the Capitol switchboard to reach members of your congressional delegation. (Click here if you need to find your representatives).   Please share this simple message:   I urge my Senator/Representative to oppose any efforts to cut core programs for women, children and families, including the Title V MCH Block Grant and Home Visiting Program, WIC and Title X.  
Other key points to share include: ·       Women and children should not be at the forefront of any discussion to reduce the federal deficit. We urge you to oppose any efforts to cut these core programs and instead take a balanced approach. ·       These programs provide the foundation for efforts to improve the health of women and children in our state. Further cuts will devastate state and local programs serving women, babies, children and children with special health care needs – and increase preventable costs.
·       Ask if the senator/congressman/congresswoman will support our cause! 2. Step Two: Click here to quickly and easily customize a template message that will be sent directly to your elected officials.   3. Step Three: After you’ve taken action, please share this message with your friends and social networks inviting others to join this mobilization. Thank you for your support. 

This e-mail was sent from Association Of Maternal And Child Health Programs ( to

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IEP Training and Surrogate Parent Certification

Don’t Miss Out!
in Salt Lake City!
Thursday, November 3, 2011
Space is still available!  Register Today!

Attention All Parents:
Does your child currently have an IEP?
Is your child being evaluated for special education services?
If so, then this IEP Training is for you!
The Utah Parent Center is pleased to announce an IEP Training in Salt Lake!
Thursday, November 3, 2011
9:00 a.m. – 3:00 p.m.
Utah Parent Center
230 West 200 South, Suite 1101,  Salt Lake City, (Lunch is on your own)
Click here for PDF flyer for this training.
 Register Today! 
Click here to register online today!  OR contact us at :
Phone:  801.272.1051 or 1.800.468.1160
Email Registration Information:  Please provide your name, phone number, email address, age and primary disability of your child and the name of the district or charter school your child attends if emailing your registration information.  Parking instructions and other details will be provided in follow up email after registering.
Surrogate Parent Certification: 
Surrogate Parent Certification as required and defined by IDEA 2004 for all public school districts and charter schools will be offered from 3:00-3:30 p.m. following the IEP Training for those who are interested.  Individuals wanting to earn Surrogate Parent Certification must attend the full day.

Topics That Will be Covered Include:
Parents as Partners in the IEP Process
Parents are important members of the IEP team.  They can and want to be effective partners with other members of the team in developing and delivering special education programs for their student with disabilities.  However, they often lack information.  This workshop will help parents understand their role, rights and responsibilities in the IEP process.  They will learn how to effectively prepare for, participate in and follow-up on IEP meetings held on behalf of their student.
Section 504 Services in Schools
Section 504 is a law that provides accessibility and reasonable accommodations in a school setting. Equal access and opportunity is the focus!  The provisions of this law are not intended to reduce learning expectations.   In this workshop, we will discuss how a student becomes eligible for services and the types of accommodations available depending on the individual needs of the student.  We will also discuss several problem solving scenarios that could occur and give recommendations for a successful outcome.  This workshop will help parents understand their role and responsibilities in working with school personnel.
Positive Behavioral Interventions and the IEP
The IEP team must consider, when appropriate, strategies including positive behavioral interventions, strategies and supports to address the behavior through the IEP Process.  Learn more about functional behavioral assessment, behavioral intervention plans and your child’s IEP.
Transition to Adult Life Overview
An overview offering information about transitioning to ‘life after school’.  This will help parents understand the transition to adult life, prepare to participate in plan development and implementations as well as focus on issues and changing roles during this time.
Tools for Constructive Communication
Some of the most important skills – or “tools” – needed by IEP team members are good communication skills.  In this interactive workshop, participants will learn and practice 5 basic skills that can lay the foundation for the effective exchange of ideas and information.  Effective relationships often employ constructive communication – the kind that builds effective teamwork.  You will want these tools in your communication toolbox!
Surrogate Parent Certification
The Individuals with Disabilities Education Act (IDEA) requires that school districts and all other education agencies protect the rights of children with disabilities. Whenever the parents of a child are not known, cannot be located after reasonable efforts, when educational rights have been removed from the parent or when the child is a ward of the court and no other person meets the legal definition of parent, a surrogate parent must be appointed. Both school districts and juvenile courts in the state have the authority to appoint surrogate parents when needed. In addition, parents themselves, or children who have reached the age of majority, may request the assistance of a surrogate parent. Surrogate parents are individuals appointed to act in place of a parent to participate in making special education decisions for a child. Surrogate parents appointed for educational purposes are sometimes referred to as educational surrogates. At the completion of this workshop, participants will have the appropriate training to volunteer as a surrogate parent if they choose to do so.
For more information about the Utah Parent Center, please visit us at

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October 26th newsletter

Please check out our latest newsletter by clicking here. We have great information on redistricting here in Utah, Social Security information that requires action TODAY and many exciting upcoming events you do not want to miss. Read it all HERE.

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Recall: Nostrilla Nasal Decongestant – B. Cepacia Alert

Recall: Nostrilla Nasal Decongestant – B. Cepacia Alert

  —Report by Maggie Shader, Consumer Reports
October 21, 2011

Insight Pharmaceuticals has recalled 34,092 bottles of Nostrilla, a nasal decongestant oxymetazoline) spray used to relieve nasal discomfort caused by colds, because the spray may contain bacteria.

The bacteria, Burkholderia cepacia, may cause serious infection in individuals with a compromised immune system or chronic lung condition, such as cystic fibrosis. Nostrilla Nasal Decongestant was distributed nationwide through retail outlets and pharmacies. The spray comes in a half ounce, plastic bottle marked with an expiration date of May, 2014. The affected products also have lot number 11G075, and UPC code 6373673005.
Consumers who purchased Nostrilla can return the product, and also contact the company at 877-546-9059 for more information. Consumers should also contact their physician or healthcare provider if they experience any problems that may be related to taking the recalled nasal spray. Healthcare professionals and patients can report adverse events or side effects to the U.S. Food and Drug Administration’s MedWatch Safety Information and Adverse Event Reporting Program, either by visiting, or call by calling 800-332-1088 to get a form sent to you by mail.

For FDA announcement, visit

For Consumer Reports article, visit

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LCPD – November meeting

November 3, 2011
12:30 pmto2:00 pm

The next meeting of the Legislative Coalition for People with Disabilities will be on Thursday, November 3rd from 12:30 – 2 at the Division of Services for the Blind and Visually Impaired (DSBVI).  1950 West 250 North, Salt Lake City.

The agenda will include announcements, FY2012 Budget presentations by Agency Directors and a wrap up of redistricting.

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Daytime Family to Family Network ~ Utah Caregiver Cooperative and Latitude Program

November 9, 2011
10:00 amto12:00 pm

Daytime Family to Family Network

Wednesday, Nov 9
10:00 am to 12 noon
4444 South 700 East Suite 203
(northwest corner of 4500 S 700 E)

Utah Caregiver Cooperative and Latitude Program

What are they?

How can they help me?

Why a Utah Caregiver Cooperative

With funding from a Utah DD Council grant a caregiver cooperative has been formed. The purpose of the cooperative is to help parents join together to better support themselves and their children with disabilities. Hundreds of people with disabilities are languishing on the state’s waiting list, and with extremely tight government budgets, the chance of actually receiving services is diminishing. Are large number of parents are wondering what they can do to secure a future for their child. Parents can join a cooperative, and with other parents, pool resources and create supports and networks that they otherwise may not be able to afford. Parents can join the cooperative for no charge and can participate anywhere in the state.

Latitude–Independent Living

Latitude is a program dedicated to increasing the quality of life for individuals with disabilities. This program was brought together by a parent group who could not get DSPD funding for their children. Many participants in the Latitude Program have been on the DSPD waiting list for several years. This program was designed to be paid for by the individuals’ social security benefits. The clients pay the monthly fee for the services provided.

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Children’s SSI at Risk

The House Ways and Means Human Resources Subcommittee has scheduled a hearing on October 27th, at 9:00am, on Children’s Supplemental Security Income (SSI), a program that serves as a critical lifeline for families raising children with severe disabilities.

Utah Family Voices is compiling stories from families in our state to educate about how important this program is to our children and families. If you or someone you know is willing to write a letter about the benefit and vital support SSI provides, please sent to with SSI in the subject line by next Wednesday October 26th.

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Temple Grandin presented with Peek Award

November 3, 2011
7:00 pmto9:00 pm

Temple Grandin event flyer

Utah Film Center presents an evening with Temple Grandin.

Join us to celebrate the inaugural Peek award for disability in media.

Thursday, November 3rd – 7:00PM

Rose Wagner Performing Arts Center – TICKETS ON SALE NOW or by calling (801) 355-ARTS or (888) 451-ARTS

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