What’s New

Coronavirus (COVID-19)

The Centers for Disease Control and Prevention (CDC) is closely monitoring an outbreak of respiratory illness caused by a novel (new) coronavirus.  For more information, please visit their website at: https://www.cdc.gov/.

In addition, the DE update for the coronavirus can be found at the Delaware Department of Health and Social Services website: de.gov/coronavirus.

To view a list of COVID-19 resources, complied by Family SHADE, please click HERE.

Easterseals Offers New Respite Grant to Families in Need

Easterseals Delaware & Maryland’s Eastern Shore’s newest program will offer respite grants to families who are caring for a child under 18 with mental or behavioral health issues. The program is funded through the Division of Prevention and Behavioral Health Services (PBHS). The Child and Adolescent Caregiver Respite application period is open now along with their other respite grant programs. For more information, please click here: EastersealsOffersNewRespiteProgram

To view a flyer about all respite care programs offered through Easterseals, click here: RESPITE FLYER

What You Should Know for the 2019 – 2020 Flu Season

Getting a flu vaccine every year is the best way to protect yourself and your family from flu and its potentially serious complications. CDC recommends that everyone 6 months

and older get vaccinated by the end of October.  For more information about the flu, please click HERE to visit the CDC website.

Delaware Division of Public Health seasonal flu shot clinics are intended for those age nine and older who have no healthcare provider or whose insurance does not cover flu vaccinations. For more information about the 2018-19 full clinic schedule, please click HERE.

Back-to-School: Tips for Parents of Children with Special Needs.

  • Organize all that paperwork
  • Start a communication log
  • Review your child’s current IEP
  • Relieve back-to-school jitters
  • Keep everyone informed
  • Establish before- and after-school routines
  • Stay up to date on special education news
  • Attend school

Summer Camps

Summer Camps

For a list of summer camps you may be interested in for your child, please click HERE.

Better Communication/Better Care Project

Family SHADE and one of its partner organizations, Danio Diary, won a federal award for innovation in care coordination. The Health Services and Resources Administration/Maternal and Child Health Bureau awarded a Care Coordination Challenge Awarded to Family SHADE and Danio Diary.  For more information, please click HERE.  The goal of the Better Communication Better Care Pilot Project is to examine the effectiveness of adapting the Danio Diary App for use by families to facilitate care coordination for the children and youth with special health care needs.  

Family SHADE is currently recruiting families, who have a child with a special healthcare need, to participate in a pilot project focused on care coordination.

As a participant in the  project families will:
• Be eligible to receive up to $50 in Amazon gift cards
• Have access to the innovative Danio Diary technology
• Receive assistance with identifying resources and services for your child with special healthcare needs
• Have an opportunity to improve care for your child with a disability or chronic health condition.

Contact Family SHADE today to participate in this new program!
Call today: 1-855-755-SHADE (1-855-755-7423) or contact us by email:
familyshade@udel.edu

(Family SHADE is a community dedicated to supporting families of children with disabilities and chronic medical conditions. Learn more at www.familyshade.org.
Danio Diary is a app technology designed to assist and improve the management and communications of your child’s care. Learn more at www.aboutdaniodiary.com.)

Educational Sessions on Emergency Preparedness for Delaware Residents

These workshops, made possible by the Delaware Emergency Management Agency through its Citizens Corps initiative, will focus on steps individuals and families can take to be better prepared for an unexpected emergency or disaster and will include preparedness steps for individuals and families with access and functional needs. The discussion will also highlight the importance of communities planning together and supporting one another during disasters.

For more information about upcoming workshops in April and May, please click HERE.

What You Should Know for the 2018 – 2019 Flu Season

Getting a flu vaccine every year is the best way to protect yourself and your family from flu and its potentially serious complications. CDC recommends that everyone 6 months

and older get vaccinated by the end of October.  For more information about the flu, please click HERE to visit the CDC website.

Delaware Division of Public Health seasonal flu shot clinics are intended for those age nine and older who have no healthcare provider or whose insurance does not cover flu vaccinations. For more information about the 2018-19 full clinic schedule, please click HERE.

Back-to-School: Tips for Parents of Children with Special Needs.

  • Organize all that paperwork
  • Start a communication log
  • Review your child’s current IEP
  • Relieve back-to-school jitters
  • Keep everyone informed
  • Establish before- and after-school routines
  • Stay up to date on special education news
  • Attend school

Friendship Toolkit

  • Friendships – Building a Good Life. Strategies for Families of Children with Disabilities and their peers, communities and Schools.
  • Tips for teachers and support personnel

Visual Schedules – How to Use Visual Schedules to Help Your Child Understand Expectations.

How to Create and Use Visual Schedules  PBIS World explains, Why, When and How to use a visual schedule

Placement Decisions to consider when looking at the Least Restrictive Environment.

Wandering – Big Red Safety Tool kit  The National Autism Association created a toolkit with the following tools and resources:

  • Caregiver Checklist
  • Family Wandering Emergency Plan (FWEP)
  • First‐responder profile form.
  • Swimming Lessons Tool
  • Root‐cause Scenario & Strategies Tool
  • Stop Sign Prompts
  • Social Stories
  • Caregiver Log
  • Sample IEP Letter (Never allow restraint/seclusion practices into any IEP as this increases associated risks.)
  • How To Get Tracking Technology In Your Town
  • General Awareness Letter to share with schools, homeowner’s association, law enforcement agencies, physicians, etc.
  • Five Affordable Safety Tools
  • Caregiver Resources

Parent Information Center of Delaware‘s trained staff is up-to-date on the latest in parent engagement, special education advocacy, and how schools in this state work.

Early Childhood

  • Behavior and Discipline toolkit
  • Reading Toolkit
  • School Choice/Charter School Toolkit
  • Special Education Laws & Regulation
  • Special Education Toolkit

Education K-12

  • Reading Toolkit
  • School Choice/Charter School Toolkit
  • Special Education Laws & Regulation
  • Special Education Toolkit
  • Transition 14+ Toolkit
  • Behavior and Discipline Toolkit

Summer Camps

For a list of summer camps you may be interested in for your child, please click HERE.

DART Bus Schedules – Effective December 17, 2017

https://www.dartfirststate.com/information/routes/index.shtml

Text 2 B Ready: Create an Emergency Plan and Go-kit
Register now!

Does preparing for emergencies seem like an overwhelming task? Why not tryText 2 B Ready, a new method to create an emergency plan and go-kit that breaks the steps down into manageable activities and saves time and hassle. Over the course of 8 weeks, you’ll receive text messages with instructions on what to put together to successfully make a basic plan and go-kit. The program will begin on Monday, February 5, so sign up now!

For more information and to register by Sunday, February 4th, please click HERE.

Adults with disabilities and parents of children with disabilities are needed to help plan or participate in emergency training exercises. Your input is important!

Emergency training exercises use scenarios to simulate various types of emergency situations.  These exercises provide an opportunity to test the plans that will be used during a real emergency.  It is important that people with disabilities participate in training exercises to test whether the plans allow people with a variety of disabilities to effectively access emergency services.

If you are an adult with a disability or the parent of a child with a disability and are interested in helping to plan or participate in an emergency training exercise, please sign up here:

Volunteers for Emergency Training Exercises.  (You may also use this link: http://bit.ly/2BwLish)

Those who indicate that they are interested in participating will be contacted about their availability when a training exercise is scheduled.   If you have questions, please contact Phyllis Guinivan (pguiniva@udel.edu, 302-831-7464) at UD’s Center for Disabilities Studies.

START - Play Logo

The START-Play Project at the University of Delaware is seeking participants in an important study of early intervention. The aim of the study is to help babies to improve their motor and cognitive abilities.  This is their last year of recruitment for the study…Please spread the word!

If you know a baby at 7-16 months old, was born preterm or has difficulty sitting up, reaching for toys, or moving from sitting to stomach, please provide this information for the families.  They offer free motor and cognitive assessments and intervention for these babies.

Please visit  the website for more information:  http://start-play.unl.edu

If you have any questions, please contact:  Andrea Cunha, 540 S College Avenue, Newark/DE/ 19713, andreabc@udel.edu, (302) 831-8666.

Presented by:

Statewide Programs for Deaf, Hard of Hearing,& Deaf-Blind
Delaware Department of Education
Office of Special Education Programs
Division for the Visually Impaired
Delaware Statewide Programs Association
Autism Delaware
Center for Disabilities Studies(CDS)
Delaware Network of Excellence in Autism (DNEA)

For more information about the Outside the Box Annual Conference 2017, please click HERE.

Summer Camps

Below is a list of summer camps you may be interested in for your child this summer:

Autism Delaware Summer Camp:  Openings for 30 youth with autism spectrum disorder, entering the 3rd grade and up through, and including, age 17.  This summer camp is held at Children’s Beach House in Lewes, DE.

Children’ Beach House (Asthma Camp):   A week long day program for children ages 7-11 with asthma. Supervision is provided by a full medical staff including physicians, nurses, and respiratory therapists. Activities include arts and crafts, outdoor activities and nature exploration. Camp is held at Children’s Beach House in Lewes, DE.

Dragonfly Forest Summer Camps:  Overnight summer camps for children ages 7 to 14 with serious illnesses located in Dingsman Ferry, PA.  Dragonfly Forest accepts children across the spectrum of needs (from Verbal to Non-Verbal, High Functioning to High Needs).  However, it is required that campers to be fully independent with toileting and showering.

Easter Seals Camp Fairlee:  Offers multiple summer programs for children and adults with physical disabilities and/or cognitive impairments.

Kamp for Kids (Diabetes Camp):  Camp for children ages 4-14 with diabetes and their siblings and friends. Campers will learn about health and wellness through fun and exciting activities. Camp is held at the University of Delaware McDowell Hall.

Mary Campbell Center Summer Camp:  Activities include field trips, swimming, games, arts and crafts and cooking. Two week camp sessions for children with special needs between the ages of 3-21 and their siblings.

Special Olympics Delaware Summer Camp at Camp Barnes: 3 day and 2 night camp, located near Bethany Beach in southern Delaware, features sports training and traditional camp activities. Camp is offered to all registered Special Olympics Delaware athletes.

United Cerebral Palsy (UCP) Summer Camps:  Camp Manito in New Castle County and Camp Lenape serving both Kent and Sussex Counties, are for children and young adults (ages 3-21) with orthopedic disabilities. The camps are also open to all children, with or without disabilities.

Please check out the websites of our member organizations for information on other summer camps.  To access their websites, please go to:  Family SHADE Member Organizations.

Nowhere Else to Turn:  Home Safety and Comfort for People with Disabilities and Their Caregivers

Nowhere Else to Turn is a project of the Delaware Assistive Technology Initiative at the University of Delaware, Center for Disabilities Studies and is funded in part by the Christopher and Dana Reeve Foundation.

Assistive technology (AT) and home modifications can enable people with disabilities to live safely, comfortably and successfully in their own homes. But not everyone who can benefit from AT and home modifications can get what they need. Sometimes, it is a matter of not knowing what kinds of solutions are available. In other cases, individuals and/or their families cannot afford to purchase what they need.

Nowhere Else to Turn focuses on home life, and the access and safety challenges that individuals with disabilities—and often their family members—encounter due to accessibility challenges within their residence or difficulties they have in engaging with home routines such as eating, bathing, dressing or enjoying leisure pursuits.  The program provides home modifications and assistive technology to eligible individuals who are unable to live safely and comfortably in their homes because of a paralysis-causing condition, who cannot afford the needed home modifications and/or assistive technology, and who have exhausted their search for funding from other sources. As a “last resort” fund, applicants must demonstrate that they have sought support for needed AT and home modifications from other sources and been denied.

For more information, please see the application package which includes an application form and guidance about how to complete the form.

START - Play Logo

The START-Play Project at the University of Delaware is seeking participants in an important study of early intervention. The aim of the study is to help babies to improve their motor and cognitive abilities.  Please spread the word!

If you know a baby at 7-16 months old, was born preterm or has difficulty sitting up, reaching for toys, or moving from sitting to stomach, please provide this information for the families.  They offer free motor and cognitive assessments and intervention for these babies.

Please visit  the website for more information:  http://start-play.unl.edu

If you have any questions, please contact:  Andrea Cunha, 540 S College Avenue, Newark/DE/ 19713, andreabc@udel.edu, (302) 831-8666.

ZIKA VIRUS    

What's New

Zika is a disease caused by a virus primarily transmitted through the bite of infected Aedes mosquitoes. Most people who are infected with Zika do not develop symptoms. About one in five people infected with the virus develop the disease and symptoms are generally mild. Anyone who lives or travels in the impacted areas can be infected.  For printable facts and more information on Zika and mosquito control, please visit the PrepareDE.org website at http://www.preparede.org/zika/.

Other resources include:  The Centers for Disease Control and Prevention:  https://www.cdc.gov/zika/ and the Delaware Thrives Family SHADE page: http://dethrives.com/family-shade (click on the banner that appears at the top of the page).

DELAWARE LIFESPAN RESPITE CARE NETWORK
This program helps Delaware caregivers find and pay for respite care. Caregivers receive free information, guidance, and referrals to respite care providers throughout the state. They can also apply for up to $500 in financial assistance per care recipient per year. The Delaware Lifespan Respite Care Network is overseen by an advisory committee representing consumers, state agencies, and service providers. It is administered by Easter Seals Delaware & Maryland’s Eastern Shore. For more information, visit http://www.delrespite.org/ or call 302-324-4444, ext. 2078.

flowers1

Image by Renesis under Creative Commons license.

Our own Nancy Lemus appears on La Conexion/The Connection to share the word about Family SHADE  (posted 7/21/2105)

The Disability Law Program shares important tips regarding your rights as a recipient of services from a Medicaid Managed Care Organization.  (posted 4/13/15)

How to Manage your Managed Care Organization (1)

Family SHADE featured on WITN Channel 22!  (posted 2/18/15)

Check out the 11 minute interview that gives a great overview of all that Family SHADE offers to the community.

Check out our new Member Spotlight  (posted 2/12/15)

Learn about Interim HealthCare.  www.familyshade.org/member-spotlight/

Healthy Transitions Mobile App available for free on Google Play and iTunes  (posted 2/2/15)

Healthy Transitions is a mobile app designed to help young adults with special healthcare needs build skills needed to gain independence and manage their own healthcare. The app features videos that explain how to handle real life scenarios and an interactive game to reinforce the ideas presented in the videos. The videos are categorized into four sections; healthcare, insurance, healthy lifestyles and relationships.transition app