Monday Memo from Raising Special Kids June 27, 2011

Monday Memo:

News for the Week June 27 - July 04, 2011

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June 27, 2011

SDSK

Welcome to our weekly memo

featuring news, tips, resources, and reminders to help you stay in the know.

National News

Access to Care for Children with Public Insurance

Children enrolled in Medicaid (AHCCCS) or CHIP are more likely to be refused an appointment or experience a long wait to be seen by a medical specialist than children with private insurance, according to a recent article in The New England Journal of Medicine. In the study, research staff called specialty practices and posed as parents seeking an appointment for their child. Of the callers who reported their child had Medicaid or CHIP, 66% were denied an appointment, compared to 11% of appointment requests for children with private insurance. When children enrolled in Medicaid or CHIP did receive an appointment, they had to wait on average 22 days longer than children with private insurance. The authors advocate for policy interventions to ensure that children covered by Medicaid and CHIP receive adequate and timely health care services. Read the report at:

Auditing Access to Specialty Care for Children with Public Insurance
The New England Journal of Medicine
June 16th, 2011

Enforcement of U. S. Supreme Court's Olmstead Decision

WASHINGTON - The Justice Department filed papers seeking to intervene in a case on behalf of thousands of Texans with developmental disabilities to enforce their right under the Americans with Disabilities Act (ADA) to receive services in the most integrated setting appropriate to their needs. (Steward, et al. v. Perry, et al.)

The proposed complaint by the United States alleges that Texas unnecessarily segregates individuals with developmental disabilities in nursing homes instead of providing the opportunity to receive integrated, community-based services. The proposed complaint also alleges that Texas places individuals with developmental disabilities who currently live in the community at risk of unnecessary placement in nursing facilities by failing to provide necessary community-based services in violation of the ADA and Section 504 of the Rehabilitation Act.

The Justice Department's filing comes on the 12^th anniversary of the Supreme Court's decision in Olmstead v. L.C., which held that the ADA requires public entities to provide community-based services to persons with disabilities when such services are appropriate.

Arizona News

Proposed Respite Cuts

The AHCCCS proposal to reduce by half the yearly maximum of 720 hours of respite care was discussed at a forum on June 23^rd at the Disability Empowerment Center. Raising Special Kids wants to acknowledge and thank the hundreds of parents and family members who attended, or called in from Tucson and Flagstaff. Many parents provided public comment with compelling and emotional statements about the significant impact of the proposed cuts and exemplified the strength and resilience of families.

The respite program, which enables families to keep children with the most significant disabilities in their homes, is facing a 50% cut. Such a steep reduction in services is harmful to families and to our entire system of care. Family members are encouraged to call, visit, and write their elected state representatives who have reduced AHCCCS funding by $2.6 billion.

Preserving respite care is an important issue, but the legislature's cuts have also eliminated services for hundreds of thousands of Arizona's most vulnerable residents, including those with behavioral health needs and catastrophic medical expenses. This hardship is being shared by many Arizona residents who have been severely impacted by AHCCCS budget cuts. http://www.azahcccs.gov/reporting/federal/commentform.aspx

For more information on respite care and family caregivers: http://tinyurl.com/RespiteCareStudy

Arizona Plans Health Insurance Marketplace

Using a federal grant from the Affordable Care Act health reform law, the Arizona Governor's office is researching how an affordable health insurance marketplace (called an "exchange") would work in Arizona. The "exchange" would be an on-line system where individuals and small employers could buy health insurance, apply for a federal subsidy to purchase private health insurance, or enroll in AHCCCS and KidsCare. The site would immediately process your eligibility and let you know what plans are available and what subsidies you qualify for - no extra paperwork or waiting in line!

Children's Action Alliance has been emphasizing the need for user-friendly, one-stop shopping site so Arizona families can easily navigate between the various health care resources available to them under health reform. For more information on the Governor's health exchange planning, visit the website here.

Featured Resources

Study says 1 in 13 US children have food allergy

Food allergies affect about one in 13 U.S. children, double the latest government estimate, a new study suggests. The researchers say about 40 percent of them have severe reactions - a finding they hope will erase misconceptions that food allergies are just like hay fever and other seasonal allergies that are troublesome but not dangerous. http://tinyurl.com/1-in-13-Food-Allergy

Portable pools increase drowning risk

A new study warns parents that portable pools are not without their risks. The report, published in the journal Pediatrics, evaluated the number of fatal and nonfatal submersions by children under 12 years old in portable pools. Using data from the U.S. Consumer Products Safety Commission for the years 2001 and 2009, the researchers found that 209 children drowned in portable pools during that time. Thirty-five children had accidents, but survived. http://abcnews.go.com/Health/portable-pools-increase-drowning-risk/story?id=13869625

Events and Activities

Tracheostomy Education Fair

The 3^rd Annual Trach Fair

DATE: Saturday, July 9, 2011, 10 a.m.-2 p.m.

LOCATION: Melvin L. Cohen Conference Center, Rosenberg Children's Medical Plaza

1920 East Cambridge Avenue

Phoenix, AZ 85006

Free Admission for all parents, caregivers and healthcare professionals

For further Information please contact Kristen Meliska, Trach and Airway Program Coordinator at (602) 933-0985

Northern Arizona: Raising Special Kids in partnership with Navajo Nation Growing in Beauty Program presents - Workshops for Families and Professionals

DATE: Wednesday, July 13, 2011 10:00 a.m. - 3:00 p.m.

LOCATION: Page, AZ, Coconino County Community College, 475 S. Lake Powell Blvd., Classroom A-1

Free workshop series for parents of children birth to five.

10:00 am - 12:30 pm - Organizing Your Child's Records

Learn efficient methods to track special education,

ISP, therapy and medical records

Turning 3, What's Next? (AzEIP to Preschool

Transition)

Learn how to transition your child from AzEIP services

to preschool services provided by the school

district.

12:30 pm - 1:00 pm - Lunch Break

1:00 pm - 3:00 pm - Positive Behavior Support

Training on effective techniques for behavior management

RSVP: Registration required - Space limited. Please register by contacting Raising Special Kids 800-237-3007 or www.raisingspecialkids.org

Light refreshments included. Staying for the whole day? You may want to bring a lunch.

No child care.

The Arizona Technology Access Program invites you to a brown bag lunch series on assistive technology (AT), "AT in the Bag". The luncheon was developed to promote a discussion of assistive technology products and feedback for AT training in Arizona. This casual six-week luncheon will be every Thursday starting on July 14th at the Institute for Human Development IHD Room 111 on the Northern Arizona University Mountain Campus from 11:45 to 12:30. A different topic and demonstration of AT will be introduced each week.

July 14th - Mainstream AT

July 21st - AT for Communication

July 28th - AT for Vision

August 4th - AT for Hearing

August 11th - AT for Stroke

August 18th - AT for Spinal Cord Injury - Art

During the first meeting only (July 14th), lunch will be provided. Space is limited and this event is open to the public, so please email Mellowdee.Brooks@nau.edu to RSVP or for more information.

This Week: Free Training and Workshops

Organizing Your Child's Records

July 8, 2011, 10:00 AM - 12:00 PM

Bring your child's special education, ISP, therapy and medical records to this "make and take" session to create your own filing system.

Northern Arizona Workshops:

Guardianship Turning 18, What's Next?

July 6, 2011, 5:30 PM - 7:30 PM

Making the decision; understanding the process. Learn what guardianship involves before your teen turns 18 and about alternatives to guardianship.

Turning 3, What's Next?

July 12, 2011, 5:30 PM - 7:30 PM

Learn how to transition your child from AzEIP services to preschool services provided by the school district.

Parent Leadership Opportunities

Assist in hosting an information table at Phoenix Children's HospitalTracheostomy Education and Vendor Fair - Thursday, July 9, 2011 anytime between 10:00 am and 2:00 pm.:
Parent Leaders with children using behavioral health services are needed for:
Focus groups
Monthly workgroups
Presenting parent perspective

Family Support Position open at Raising Special Kids

Family Support Specialists provide direct assistance with intake calls for families of children and youth needing information, referrals, and problem-solving consultation and assistance. Provide training on a variety of topics to assist parents of children and youth in becoming effective advocates. Conduct outreach services for families and youth who represent diverse populations and underserved areas. For more information and how to apply: http://www.raisingspecialkids.org/about-us/job-opportunities.aspx

Quote of the Week

"I'm grateful for all the support that Raising Special Kids gave me. Now my son has needed services because of your help and information."

Raising Special Kids works to improve the lives of children with disabilities and special health needs by providing parents with information, training and support.