No Child’s Records Left Behind

Family Matters LogoJoin Family Matters for No Child’s Records Left Behind Webinar

Happening: June 1st at 11am

This webinar will be presented by Karrie Potter. In this webinar we will explore what is included in your child’s educational records, some laws that apply to your child’s educational records, how to obtain copies of your child’s educational records, possible ways to organize your child’s records, and how information in your child’s records can be used to improve your child’s educational outcomes.

Register here!! https://register.gotowebinar.com/register/1538003892397004125

Lunch & Learn Webinar IL ABLE Accounts: What Illinois Agencies and Disability Service Providers Need to Know

IL ABLE Logo -Lunch & Learn Webinar
IL ABLE Accounts: What Illinois Agencies and Disability Service Providers Need to Know

 

 

TIME: Noon – 1:00 pm

DATES:

May 25, 2023
July 19, 2023


Join IL ABLE for this informational webinar specifically for Illinois agencies and disability service providers who serve clients with disabilities in any of these roles:

  • • Agent under power of attorney
  • • Guardian
  • • Social Security representative payee


IL ABLE Accounts are an important savings tool for your clients to save money and stop spending their needed assets unnecessarily in order to avoid the SSI $2,000 asset cap. IL ABLE Accounts protect benefits and allow clients to save for meaningful expenditures that can improve quality of life and build greater independence.

Agencies and organizations can open and manage the Account in some instances. It is essential to understand the rules and learn how to do it correctly.

 

This webinar will cover:

  • • IL ABLE Account basics
  • • The role of agencies and service providers as Authorized Individuals
  • • How-to instruction for entities who want to open and manage IL ABLE Accounts as an Authorized Individual on behalf of the ABLE Eligible Individuals they serve.


Register for the May 25th Webinar
Register for the July 19th Webinar

March with Family Resource Center on Disabilities on Saturday, July 22 at Annual Disability Pride Parade

Join Family Resource Center on Disabilities (FRCD) for a day of solidarity, awareness, and celebration of disability pride.

WHEN:
Saturday, July 22, 2023
Parade: 11:00 am-12:30 pm
Post Parade Festivities: 12:30 pm

WHERE:

March with Family Resource Center on Disabilities (FRCD) at this year’s Annual Disability Pride Parade on Saturday July 22. The overall goal of the Disability Pride Parade is change the way people think about “disability” and define it. Now is the time to promote in society the belief that disability is a natural and beautiful part of human diversity, of which the people who live with disabilities can be proud.

Contact Paula Wills at paula.wills@frcd.org or call FRCD’s Office at 312-939-3513.

REGISTER:
There is no registration fee, but we ask that you register to march with FRCD.

Desfil e Anual del Orgullo de los Discapacitados

Marcha con Family Resource Center on Disabilities(FRCD) en este ano Desfile Anual del Orgullo de los Discapacitados el sábado 22 de julio. El objective general del Defile del Orgullo de los Discapcitados es caminar la forma en que le gente piensa sobre la “discapacidad” y la define. Ahora es el momento de promover en la sociedad la creencia de que la discapacidad es una parte natural y hermosa de la diversidad humana, de la que las personas que viven con discapacidades pueden enorgullecerse.

QUÉ Únase con Family Resource Center on Disabilities para disfrutarde una jornada de solidaridad concientización y celebración de orgullo los de discapacitados.

CUÁNDO: El sábado 22 de julio de 2023. Desfile: 11am-12:30pm Festividades después del desfile: 12:30pm.

DÓNDE: Nos encontraremos en el área de reunión en 401 S. Plymouth Court a las 10:15am. Las festividades después del desfile comenzarán a las 12:30pm en la plaza Daley en Washington y Dearborn.

INSCRIPCIÓN: Disability Pride Parade Family Resource Center on Disabilities www.frcd.org/dpp2017/ La inscripción es gratuita pero pedimos que se inscriba paramarcha con el FRCD.

Comuníquese con el Maria Castillo (312)375-8136 maria.castillo@frcd.org

Upcoming FRCD Webinars

Navigating the IEP Process: Special Education Rights Webinar

May 6, 2023 10:00 AM  (REGISTER)

Do you have questions about your child’s IEP, but don’t know how or when to ask them? Are you concerned about how your child’s IEP is being followed? Do you want to learn how to effectively prepare for your child’s IEP Meeting? This webinar provides an overview of the Individualized Education Program (IEP) and discusses the parents role as a member of the IEP team. The presentation will also focus on: -Individualized Education Program (IEP), -Least Restrictive Environment (LRE), -Procedural Safeguards. -Preparing for your child’s IEP meeting. -What to do after the meeting.

Skills For Effective Parent Advocacy: Special Education Rights Webinar

May 20, 2023 10:00 AM (REGISTER)

Are you tired of getting the run-around while wading through an alphabet soup of acronyms? Are you frustrated because you are unsure of how to help your child struggling in school? Skills for Effective Parent Advocacy will provide you with these important tools: Going from frustration to empowerment; Who is an advocate and why become one? How to effectively advocate for your child.

16th Annual Conference For Families Of Children With Disabilities

16th Annual Conference For Families Of Children With Disabilities

16th Annual Conference For Families Of Children With Disabilities

Saturday April 29

A DISABILITY ROADMAP FOR AN INCLUSIVE LIFE

FEATURING:

Daniel & Samuel Habib and

Bridget & Nancy Brown

WHEN: Saturday, April 29, 2023

WHERE: Spalding Pastoral Center

419 NE Madison Ave

Peoria, IL 61603

COST: $20/family member, $30/professional

REGISTER: Family Conference Registration Form

Transition planning for children begins in preschool and continues through high school. An early start ensures children develop the skills needed to make choices (self-direction), use their voices (advocate), develop social/emotional skills, and are included in typical activities and have access to general education curriculum and are exposed to careers and vocations.

*Breakfast items, snacks, & box lunches provided. Those with allergies or dietary restrictions are invited to being their own lunches. Download Complete Flyer:

Achieving Autism Success with Visual Strategies: Overcome Daily Challenges with Simple Tools Webinar Series

Infinitec-logo

Presented by Linda Hodgdon CCC-SLP(R), Author and Consultant for Autism & Related Learning Needs

Foundational Understanding of Autism & Communication (Part 1 of Achieving Autism Success with Visual Strategies: Overcome Daily Challenges with Simple Tools Webinar Series)

April 13, 2023  3:30PM – 5:00 PM CST

Registration Link: https://tinyurl.com/2b4nb7wb

Creating the Framework of Visual Strategies for Autism Success (Part 2 of Achieving Autism Success with Visual Strategies: Overcome Daily Challenges with Simple Tools Webinar Series)

April 19, 2023  3:30PM – 5:00 PM CST

Registration Link: https://tinyurl.com/ytsenk68

Become an Educational Surrogate Parent: Registration Open

Family Matters Logo

Become An Educational Surrogate Parent

April 21, 2023

9 am to 4 pm

at the University of Illinois Chicago

Register

or

May 1, 2023

10:30 am to 5:30 pm

at the Waukegan Public Library

Register

Family Matters is seeking volunteers in all counties of the state to act as Educational Surrogate Parents at IEP meetings for students with disabilities who are children in care of the state or who do not have a parent that can legally represent them at special education meetings.

April 21, 2023, 9 am to 4 pm

University of Illinois: Department of Disability and Human Development

1640 Roosevelt Road, room number 448

Chicago Illinois 60608

*Lunch will be on your own from 12-1*

REGISTER

May 1, 2023, 10:30 am to 5:30 pm

Waukegan Public Library

128 North Court St

Waukegan, Illinois 60025

*Lunch will be on your own from 12-1*

REGISTER

Call Family Matters at 866-436-7842 for more registration details.

Join CHOICES for these webinars: Inclusion of Young Children with Autism with Erin Barton

CHOICESEach workshop will provide strategies to support the inclusion of individuals with autism spectrum disorders and other developmental disabilities in preschool.
April 3, 2023 Part 1: Rationale, Myths and Quality
Instruction Participants will learn the rationale for inclusion for children with autism and dispel myths related to inclusion. Participants will also explore the links between the indicators of high quality inclusion and effective instruction.
April 17, 2023 Part 2: ABA, Learning Cycles and Goals
Participants will learn effective classroom practices to teach the entire learning cycle and how this relates to Applied Behavior Analysis (ABA) principles.
May 1, 2023 Part 3: Embedding Instruction
Participants will learn effective classroom practices to embed instruction throughout the routine of the day.
1.5 Contact Hours for each webinar.
Register Here Questions? Contact Us at: starnetregionii@cntrmail.org

Self-Advocacy for People with Disabilities during Hospitalization

RAISE BannerSelf-Advocacy for People with Disabilities during Hospitalization

A transition resource source from RAISE A Span Project

Although hospital stays are difficult for everyone, individuals with disabilities may have unique challenges.  These can range from inaccessible buildings, medical equipment and tests, to lack of ASL interpreters.  Also, some providers have implicit biases based on their misperception of people with disabilities.

Did you know?

Know your rights!  People with disabilities can have a support person with them in the hospital if needed[i].  Advocates noticed that disabled individuals were isolated during COVID, even if they couldn’t communicate with health professionals.  Support persons are not visitors.  They can be present at any time, not just during visiting hours.  Support people can help someone with a disability with personal care as well as to communicate, understand and make decisions.

Provider Bias

People with disabilities need to be aware of bias.  Unfortunately, some providers who see disability under a medical model sees conditions as something needing to be fixed.[ii]  People with disabilities may be seen as having a lesser quality of life, which is untrue.  Due to provider bias or even refusing to take patients with disabilities, this contributes to health disparities and worse outcomes for people with disabilities.  Less than half of providers are confident in their ability to provide appropriate care, or welcome people with disabilities to their practice.  In addition, approximately only half of the providers studied have accessible offices and equipment.

What Can Be Done?

Besides provider training, a good starting point was when The Center for Dignity in Healthcare for People Disabilities countered these stereotypes and discrimination with recommendations for prenatal care, transplants, mental health, and end-of-life care.  People with disabilities can self-advocate, or families can help them speak up, in medical settings by checking out tools for self-determination (see Resources).

 

Tips for a Hospital Stay

Although hospitalization is stressful, there are things you can do to help minimize this.  A go-bag (even for unplanned E.R. trips) could include:

  • One-day supply of medications/water bottle (until hospital pharmacy takes over)
  • ID, insurance card, phone/charger, keys
  • Other important papers like one pagers (medical conditions/allergies, medication list, hospitalizations list, specialists/primary care provider phone numbers) in a folder with blank paper/pen to take notes
  • Personal care supplies
  • Change of clothes to go home

Other than preparing ahead of time, once you’re at the hospital:

  1. Communicate with your medical team, with the help of a support person if needed. The call button must be accessible at all times.
  2. Make sure you ask the nurse about any medication changes.
  3. Ask for results of any tests, procedures, or lab work.
  4. Use shared decision-making with providers in deciding on care/treatment.
  5. Ask about supportive services if needed like physical/occupational/speech therapy or respiratory therapy.
  6. Technology can be helpful such as bed alarms for wandering or seizures, locking bed positions/bedrails, and even cameras so caregivers can rest at night.
  7. Make sure everything is in place before you go home like home health care, visiting nurse, therapists, or medical equipment.

People with disabilities should have equity in access to medical care.  These steps will help ensure equal treatment and better healthcare outcomes.

One family’s story

A parent was helping her daughter be as independent as possible, and a support person was there except at night.  When she was having problems walking, rather than diapers, the support person requested a bedside commode and physical therapy to get her strength back.  The patient was told to question any medication changes or call a family member.  This patient with autism was taught to (nicely) ask for quiet if aides were keeping her up with the TV, computer or iPhone.  When that didn’t work, she was to call the nurse.  Unfortunately, one of the aides took away the nurse call button until the support person spoke with the nursing supervisor.

Resources

Know Your Rights: People with Disabilities Can Have a Supporter in the Hospital

https://www.selfadvocacyinfo.org/resource/know-your-rights-people-with-disabilities-can-have-a-supporter-in-the-hospital-during-covid-19/

[i] https://portal.ct.gov/-/media/Coronavirus/20200609-DPH-Order-regarding-patients-with-disabilities-in-health-care-facilities.pdf

Sartec

[ii] https://www.healthaffairs.org/doi/full/10.1377/hlthaff.2022.00475