IPUL's E-News for February 5, 2021 |
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Here are the highlights of our recent activity online. Not everything is included due to timeliness. If an advertised event already took place, we've left it off. |
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Family Voices Wants To Know What You Think
Focus Group / Stipend Available
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From National Family Voices:
For some families, having their child diagnosed with Spinal Muscular Atrophy (SMA) or Duchenne’s Muscular Dystrophy (DMD) can feel overwhelming. You are suddenly expected to become experts in this rare condition, identify best treatment centers, connect with other families and determine if new emerging treatments would benefit your child.
Family Voices is convening a focus group to understand the barriers families encounter in navigating the healthcare system for a child with SMA or DMD when they are seeking treatment, peer support and local resources.
The focus group will be virtual, in English, and will last 75 minutes.
Participants will receive a $125 stipend in recognition of their time.
The information learned during the focus group will be shared with an anonymous funder. Your name will not be shared or reported.
Eligibility:
Must be a parent/caregiver of a child or young adult diagnosed with SMA or DMD.
Individuals over the age of 18 with a diagnosis of SMA or DMD are also welcome to apply.
The Focus Group will take place on: Tuesday February 23, 2021 from 3 to 4:15 ET pm; 2 to 3:15 pm CT; 1 to 2:15 pm MT; 11am to 12:15 pm PT.
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How To Register To Testify Remotely To Idaho's Legislative Session |
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Our friends at the Idaho Council on Developmental Disabilities have created a video to provide guidance on how you can register to testify remotely at the Idaho Legislature this session: |
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This takes you to a YouTube walkthrough of the steps in order to register to testify remotely during Idaho's Legislative session.
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Resilient Idaho: Hope Lives Here |
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Resilient Idaho: Hope Lives Here
Premiering Tuesday, February 16th at 8:00PM on the IDAHO Channel.
The Film explores what are Adverse Childhood Experiences, and how do they affect us in adulthood? ACES include abuse, neglect, divorce and other traumas. Research shows that if left untreated, these experiences can lead to health conditions in adulthood.
In Resilient Hope, we examine how ACEs affect Idahoans and explore a possible antidote: resilience.
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Sex abuse charges against former high school employee involve special needs student |
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Warning: Graphic News
This is beyond horrifying.
For those of us who have children who are nonverbal or those who are dealing with developmental disabilities and may not understand when abuse is happening, we worry about these situations often, and rightfully so. It is sad to say that women with disabilities experience abuse at significantly higher rates than those who do not have disabilities.
According to the National Association of Councils on Developmental Disabilities, Researchers have found that that more than 90% of people with intellectual disabilities will experience some form of sexual abuse at some time in their lives. They estimate that 15,000 to 19,000 people with intellectual disabilities are raped each year in the United States.
We must work to ensure safeguards are in place to protect our children from situations like these from ever happening. Further, we MUST ensure that our systems include safeguards and protections for our children who cannot tell a trusted adult what is happening. ~Angela Lindig, IPUL Executive Director,
Mother to an Adult Young Woman Who Cannot Tell Anyone if Something is Happening.
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Film ‘Making Sense’ starring people with disabilities representing 5 senses to premiere at Boston SciFi |
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Making Sense is the first independent feature film starring people with disabilities representing five primary senses. The film will premiere at the Boston SciFi, also known as The Boston Science Fiction Film Festival from 10 to 15 February. |
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An ageing neuroscientist grappling with the deterioration of his cognitive senses teams up with graduate students to prove his hypothesis that individuals with disabilities hold the key to unlocking a sixth sense.
That’s the theme of Making Sense, an independent film which is the first to feature five people with disabilities, each of them lacking one of the primary senses – sight, hearing, taste, touch and smell.
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What to Expect From a Telehealth Visit Videos |
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This video provides information on what to expect from a telehealth visit from home. For more information, please go to: www.telehealthresourcecenter.org.
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Este video le dará información acerca de la obtención de servicios médicos a través de telesalud. Para obtener más información, puede visitar el sitio web del Consorcio Nacional de Centros de Recursos de Telesalud en telehealthresourcecenter.org. |
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February 2021 Statewide Training:
I.D.E.A. & Understanding Your Rights and Responsibilities
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Parents receive an in-depth review of the Procedural Safeguards as defined in IDEA to ensure their student’s individualized education program is appropriate for their specific needs.
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Wednesday, February 10, 2021
6:00 - 7:00 PM MST
via ZOOM
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Registration required -
parents@ipulidaho.org
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Upcoming Events!
January 2021
27th Lunch and Learn
Self-Care in the new year for you and your child
February 2021
10th Monthly Webinar
IDEA & Understanding Your Rights and Responsibilities
24th Lunch and Learn
Dispute Resolution in Idaho: Exploring Facilitation
with guest Jeff Brandt, Idaho's Dispute Resolution Coordinator for the State Department of Education, Office of Special Education
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Contact Idaho Parents Unlimited!
The best method to reach us for assistance is through our website:
We monitor our intake phone line (208-342-5884) several times a day, and will try to respond to any request there within 24 hours. We use an automated intake phone system, so you will be leaving a message.
For questions that are not about something in our scope of work, you can still leave a phone message as above, send the question to the form on our website, or shoot us an email at parents@ipulidaho.org.
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IPUL's programs are funded through grants and contracts with the following: |
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