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May 21, 2012 

Effects of Budget Sequestration

The Association of Maternal and Child Health Programs released a fact sheet about budget sequestration and the impact this will have on the Title V Maternal and Child Health Services Block Grant and other MCH funding. Click here for a copy. This fact sheet covers a series of questions and answers detailing what sequestration means, the expected percentage cut set to take place Jan. 2, 2013 under current law, exempt programs and other additional information.

Raise In Payments for Some Medicaid Doctors

Department of Health and Human Services (HHS) made headlines last week with the announcement of a proposed rule that would increase Medicaid payment rates for primary care physicians serving Medicaid patients. The rule would bring Medicaid primary care service fees in line with those paid by Medicare for the duration of 2013 and 2014. According to a CMS release, states would receive more than $11 billion to facilitate this boost in payments.

HHS says the increase, required by the health law, would raise primary care doctors' payments for treating Medicaid patients, on average, 34 percent. Read more.

Only Half of Meds Taken by Kids Have 'Adequate' Safety Info

U.S. News & World Report

About half of medications used in children have little or no label information about drug effectiveness, safety or dosing in children, new research finds. Read article.

US lowers cutoff for lead poisoning in young kids

Associated Press

For the first time in 20 years, U.S. health officials have lowered the threshold for lead poisoning in young children. Read article.

Legacy of Katie Beckett

Katie Beckett, daughter of Julie Beckett who is behind the Katie Beckett Waiver died Friday.  The Becketts helped lead the revolution for care services provided in the home so that parents, who made too much money to qualify for Medicaid, could be covered for their children with extreme medical costs without having to keep their child institutionalized. Read more. When Arizona established a Medicaid program, it was able to incorporate the ideals of home and community care benefits championed by the Beckett family which made the waiver unnecessary for Arizona families.

Disability Advocates Ordered To Court

Disability Scoop

More than 70 disability advocates arrested last month during a Medicaid protest at the U.S. Capitol are being forced to return to Washington to appear in court. Read more.

Mark and Tricia's family started their journey of raising children with special needs when their youngest son was born with Lobar emphysema and had part of his lung removed. "He was quarantined to our home for most of the first three years of his life because of the high risk of infection," she explained. Joel was subsequently diagnosed with several additional conditions.

On the heels of that crisis, their daughter, then 8 years old, was diagnosed with Friedreich's ataxia, a rare and debilitating genetic disorder. "We were floundering," said Tricia. "We had no clue how to handle any of this."    

 A friend put Tricia in touch with Raising Special Kids where she found a variety of resources. "For me, the parent to parent connections have been the biggest blessing. To have another parent to talk to is really incredibly valuable." Mark and Tricia have found strength in helping others also. As Parent Leaders they mentor other parents, speak to classes of medical or education students and host physicians in their home as part of Raising Special Kids' training for pediatric and family practice physicians in residency programs.

Raising Special Kids needs your help to serve more families like Mark and Tricia's. Please make your donation today through our secure online system. A donation of any amount is greatly appreciated.

Fetal Alcohol Spectrum Disorders (FASD)

CDC is launching an FASD application (or "app"). The app is a way for users to access the latest information related to alcohol use during pregnancy and FASDs directly from an iPhone, iPod Touch, or iPad. From women planning a pregnancy to health care providers to families and educators, this app helps users easily find and share the latest in the prevention, recognition, and treatment of FASDs. This application is a companion to CDC's FASD website and is CDC's first health condition-specific app! Check out these features:

•          Alcohol consumption data by state
•          Easy-to-read information on diagnosis and treatments for children with FASDs
•          Individualized pages for different users - women, families, health care providers, educators, and partners
•          Training and education resources
•          Access to free materials on alcohol use during pregnancy and FASDs
•          Information on what CDC is doing in this area

To download the FASD app from your iPhone, iPod Touch, or iPad, go to the Apple App store and search for fetal alcohol spectrum disorders. You can also find it under CDC. To access it directly, visit: http://itunes.apple.com/us/app/fetal-alcohol-spectrum-disorders/id517058288?mt=8&ls=1

Webinar on Guardianship

Understand the potential benefits and drawbacks of guardianship and other legal approaches to providing decision making assistance. http://www.gottransition.org/about-us-news/24

Child Asthma Risk Assessment Tool

The CARAT is a Child Asthma Risk Assessment Tool designed to help clinicians, asthma counselors and parents determine potential risks for children with asthma. Asthma is a chronic disease with multiple risk factors and causes. Recent research has shown that the factors responsible for asthma symptoms and attacks can vary widely from child to child.

Recommended Core Measures for Evaluating the Patient-Centered Medical Home

A new Commonwealth Fund data brief describes how researchers came together as part of the Patient-Centered Medical Home Evaluators' Collaborative to identify a set of standardized measures to assess patient-centered medical homes. The brief focuses on two domains of medical home outcomes: cost/utilization and clinical quality.

5-Year Report from the Sonoran University Center for Excellence in Developmental Disabilities

The Sonoran UCEDD in the Family and Community Medicine Department at University of Arizona is one of the youngest centers in the UCEDD network. It received its first grant and UCEDD designation in late 2006. Its core function activities are reviewed in this downloadable report.  more >  

A Study on the Use of Social Robots

The Puckett Institute is conducting a study on the use of social robots to promote joint attention in children with autism, Down syndrome, and attention-related difficulties. Socially interactive robots are being used with children with special needs to improve their interaction and communication skills. We are interested in evaluating the appearance and function of these robots to determine their practicality for home use.

In this study, parents of children with special needs will view short video segments of four social robots and answer 8 questions about each robot's general appearance. Your answers are completely anonymous and you can quit at any time.
The entire survey can be done online and takes less than 15 minutes. Any parent of a child with special needs can participate.

The study is directed by Carl Dunst, Ph.D. and funded by the Department of Education. To take the survey or for more information please visit our website http://socialrobots.org/parentsurvey.php or contact Jeremy Prior by phone at (800) 824-1182 or by email at jprior@pucket.org.

Hydrocephalus Support Group Meeting

Barrow Neurological Institute

Normal Pressure Hydrocephalus (NPH) Support Group Meeting

When: Tuesday, May 22, 2012, 4:00 - 6:00 p.m.

Where: Sonntag Academic Pavilion, Barrow Neurological Institute, 350 W. Thomas Road, Phoenix, AZ 85013

Parking: Park in the 3rd Avenue Garage & cross 3rd Avenue at crosswalk

Once across the street, continue straight into building marked Sonntag Academic Pavilion

Guest Speaker: Joseph Zabramski, MD, Co-Director, Barrow NPH Center - Nationally recognized in the treatment of Normal Pressure Hydrocephalus.  Please RSVP to Maggie Bobrowitz by e-mail: info@hydroassoc.org

Safe Diabetes Sitter Caregiver Workshop

Sponsored by the American Diabetes Association

Saturday, May 26, 2012

8:30 a.m. to Noon

2108 E. Thomas Road, Phoenix, AZ 85016

-       Who is the Workshop for?
Youth 13 + years, Grandparents, Neighbors, Sitters, Potential Sitters, Child Care Providers, etc., Youth under the age of 18 must be accompanied by a parent/guardian. There will be 10 spots reserved for youth under the age of 18.

-       What will the Workshop offer?

1. A Basic Understanding of Diabetes
2. Diabetes Management
3. Symptoms and Treatment of High and Low Blood Sugar
4. How to Monitor Blood Sugar Levels
5. Insulin Administration/Insulin Pump Basics
6.  Carbohydrate Counting
7. Glucagon Administration 

Workshop is free to attend. 30 participant spots are available.

Registration is required to ensure adequate supplies.

Once you've completed the workshop, and if you request, your name can be added to the American Diabetes Association Safe Diabetes Sitter Directory. For more information or to register, please call Anne Dennis at (602) 861-4731 ext. 7096.

KidsCare II Public Training Session.
On May 29, 2012, AHCCCS is conducting a public training session to provide an overview of the KidsCare II program and eligibility requirements. Additional information is available at these links: Public Training Session 5/29/12, or KidsCare II.

Free Class from NAMI Arizona

Family to Family is a free, 12-week course for families, partners and friends of individuals with serious mental illness taught by trained NAMI family members and caregivers of individuals living with mental illness. The course examines the emotional responses families have to the trauma of mental illness; many family members describe their experience in the program as life-changing.

Starts Saturday, June 16, 2012, 10 am to 12:30 pm

Mary's Mission Clinic

736 N. Country Club Drive, Mesa, AZ 85201

Registration required. Contact 602-759-8177

Raising Special Kids' Parent Leaders share valuable experience and knowledge with new parents. As mentors they build confidence, increase advocacy skills, and provide support that decreases the isolation and grief new parents often feel when learning of a child's disability. Last year, Parent Leaders mentored 360 new parents. 0ver 90% reported they improved their ability to work with professionals, and their ability to provide for their child's needs, services, and care.

For information about Parent Leader Training, contact Janna Murrell at Raising Special Kids 602-242-4366 or jannam@raisingspecialkids.org

"Raising Special Kids has been an amazing partner for families of children with special needs, and especially for those receiving a brand new diagnosis. The support for the parent is critical and makes families stronger - they don't feel so alone, and they receive reassurance and hope for their role as parents."   - Kim Williams, RN, UMOM New Day Center

To register, call 602-242-4366 or click on the link to register online.

Unless otherwise indicated, workshops are located at our office in the Disability Empowerment Center (DEC).

Please do not wear fragrances in the DEC facilities.

Raising Special Kids

5025 E. Washington St., Suite 204

Phoenix, AZ 85034

Double Workshop - Prescott Valley