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.


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




Community Engagement: A Pathway to Competitive Integrated Employment

People gardeningCommunity Engagement:A Pathway to Competitive Integrated Employment

The employment of individuals with disabilities benefits our communities and our nation as they maximize their skills and talents and contribute fully to our economy.  Individuals with disabilities are often unemployed, underemployed, or employed at low wages because of low expectations.

The U.S. Department of Education’s Office of Special Education and Rehabilitative Services released A Framework for Community Engagement — A Pathway to Competitive Integrated Employment.

The Framework presents a Federal vision for community engagement by individuals with disabilities to inform policymakers and service providers.

Supported community engagement enables individuals with disabilities to expand skills and experience. The benefits include:

  • Building relationships and social networks
  • Sharpening workplace skills
  • Learning work skills

Community engagement provides meaning and purpose specific to the individual. Examples of community engagement opportunities include:


  • Continuing education classes
  • Volunteering
  • Using a computer at a public library

The framework also describes how service systems work together to support community engagement and links to resources for families, young people, and providers.

Review the framework here

Learn more about “competitive integrated employment” here

View the REAL Transition Partners webinar to learn about Individualized Plans for Employment

Introduction to the Vocational Rehabilitation Program – Webinar

RAISE BannerThis session will provide a basic overview of the services available from the vocational rehabilitation system for people with disabilities. It will cover eligibility, developing the Individualized Plan for Employment, available services, and financial factors to consider.

Date: Monday, Jan. 24, 2022
Time: 2pm ET
Ron Hager, Managing Attorney for Education and Employment, National Disability Rights Network (NDRN)
Ron Hager is a Senior Staff Attorney at the National Disability Rights Network in Washington, DC.  Ron provides training and technical assistance to the P&A/CAP network on special education and assists in overseeing training and technical assistance to CAP. He has specialized in disability law, particularly special education, since 1979, when he started his legal career in Buffalo as a VISTA attorney. After that, he was a Clinical Professor at the State University of New York at Buffalo Law School for nine years, supervising the Education Law Clinic. In 1991, Ron moved to Neighborhood Legal Services (NLS) where he represented clients in a wide variety of disability-related cases. As part of NLS’s National AT Advocacy Project, Ron also was a frequent author on disability-law-related issues. He was co-chair of the New York State Bar Association’s Committee on the Rights of People with Disabilities for four years, and was the President of the Board of Directors of Autistic Services, Inc., in Western New York, for 10 years. Ron earned a B.A. in Psychology from the State University of New York at Binghamton and a J.D. from the State University of New York at Buffalo Law School.
Amy Scherer, Senior Staff Attorney for Vocational Rehabilitation
Joining NDRN in December 2009, Amy Scherer provides training and technical assistance to the P&A network on issues related to Vocational Rehabilitation and the Client Assistance Program. She is a member of NDRN’s employment team which focuses on a variety of issues related to helping individuals with disabilities achieve competitive wages and integrated jobs in the community. Prior to arriving at NDRN, Amy worked for seven years at a vocational training facility for individuals with a variety of disabilities in Atlanta, Georgia. She worked primarily with VR clients as both a case manager and as a certified vocational evaluator. Amy earned a B.A. in Psychology from Furman University, an M.S. in Rehabilitation Counseling/Vocational Evaluation from Auburn University, and a J.D. from the St. Louis University School of Law.
Amy happens to be wheelchair user which has contributed to her strong interest in the areas of vocational rehabilitation and employment law. She wholeheartedly believes that all people with disabilities are capable of working in the community. The keys are appropriate job matches as well as the effective implementation of reasonable accommodations.
ASL interpretation & Spanish interpretation will be offered!

Planning for the Future for Children & Adults with Intellectual/Developmental Disabilities

Arc LogoPlanning for the Future for Children & Adults with Intellectual/Developmental Disabilities

Presented by the Arc of Illinois

FEBRUARY 24 @ 9:00AM — 12:30PM
Ray Graham Association
801 Warrenville Rd. Lower Level Conference Room Lisle, IL 60532


  • What You Need to Know about Special Needs Estate & Future Planning and Government Benefits
  • Government benefits & programs in Illinois for children & adults with special needs… and how to navigate the “maze”
  • Appropriate special needs estate planning, necessary to qualify for, and in order not to lose, government benefits
  • Guardianship and alternatives
  • Guidance on preparing instructions & thoughts for future care providers


Understanding the laws that protect Youth and Young Adults Post High School Webinar

parent center network logoUnderstanding the laws that protect Youth and Young Adults Post High School Webinar

REACH for Transition: Resources for Employment, Access, Community Living & Hope presents: “Understanding the laws that protect Youth and Young Adults Post High School”
The mission of the Statewide Parent Advocacy Network (SPAN) is to empower and support families and inform and involve professionals and others interested in the healthy development and education of children and youth.
Presented by: Diana Autin, Executive Co-Director, Statewide Parent Advocacy Network
WHEN: January 24, 2017, 12:00 noon – 1:15 pm Eastern Time
QUESTIONS: Contact Dawn Monaco –


Special Education: Transition Webinar Series

Family Matters LogoSpecial Education: Transition Webinar Series Presented by Family Matters PTIC

Guardianship and Alternatives to Guardianship

Join us for a webinar on Aug 11, 2016 at 12:00 PM CDT.

Register now!

The speaker will review guardianship versus some less intrusive and restrictive alternatives to guardianship and discuss the pros and cons of each alternative. Consent issues such as right to terminate life support systems, right to refuse medical treatment, residential placement decisions, etc. will be discussed. Many persons with cognitive disabilities are under guardianship even though there may be other options available to them and their families. By addressing these options and their pros and cons, families and individuals will gain knowledge of a variety of alternatives that may better fit their needs.

Building Bridges from School to Adult Life for Students with Disabilities: What Families Need to Know and Do

 Join us for a webinar on Aug 31, 2016 at 12:00 PM CDT.

Register now!

Research tells us that all youth should be actively planning (bridge building) to make successful transitions to adult life, especially youth who disabilities! Parents/families and their students who have disabilities have a vehicle for this bridge-building in the IEP transition plan and should take advantage of the opportunity to consider and plan for all facets of adult life, as well as the community services and relationships that could add strength to the “bridge”. Proactive partnerships between community service providers, schools, and families are essential in creating dynamic person-centered transition plans, maximizing available resources and supporting the dreams and self-determination of youth with disabilities. This webinar will provide information to parents/families about secondary transition; the critical role of parent/family in assisting transition planning teams; parents/families assisting their young adults to successfully navigate between the education and adult service systems; and, supporting the use of a variety of tools that increase the participation of young adults and their families in building a solid bridge from school to adult life.

Preparing Students with Disabilities for Successful Transition to College

 Join us for a webinar on Sep 15, 2016 at 12:00 PM CDT.

This webinar will NOT be archived! You must attend the live webinar in order to receive the handouts!

Register now!

The transition to college can be challenging for students with disabilities, but with the proper preparation, they can enjoy success! Author and Columbia University learning consultant Elizabeth C. Hamblet explains how the system for accommodations works at college, describes students’ rights and responsibilities within that system, and shares what the research says are the skills and knowledge correlated with success at college. She also reviews the paperwork students need to apply for accommodations and discusses what accommodations may be available.

Taking A T Along – Transitions for People Who Use Assistive Technology

Join us for a webinar on Sep 21, 2016 at 12:00 PM CDT.

This webinar will NOT be archived! You must attend the live webinar in order to receive the handouts!

Register now!

No matter how simple or complex your child’s transition may be, the new start always means that steps must be taken to ensure that AT that was working well in one environment is used in the new environment , and AT use is re-examined and adapted to meet new environmental demands. With the right kind of skills and supports leading up to and during transitions, continuity of AT use is much more likely.

This webinar about AT and transition will invite participants to use three aspects of effective transition preparation as a basis for helping individuals who use AT to plan their transitions from school to post-school living and work environments. We will address AT skills for Independence; Self-determination and AT; and activities to ensure quality transition planning. Participants will learn about ways to help students leaving high school to be as independent as possible in their AT use and as prepared as possible to use it in post-high school environments.

Disabilities and Sexuality Discussion for Parents.

Disability and Sexuality  for parents of children with disiabilities

Interactive Workshop

Learn about new resources

Illinois Imagines Chicago at Access Living 115 W. Chicago Ave.
April 13, 2015 6:00—8:00 pm
RSVP: Fulani Thrasher 312-640-2190

Sexuality and disability Disscussion  for parents

Illinois Imagines Chicago is a collaborative team of disability service providers, rape crisis center workers and self-advocates working to address the issue of sexual violence prevention against people with disabilities.

9th Annual College Summit for Youth and Young Adults with Disabilities

Mayor's Office For People with Disabilities LogoMayor's Office For People with Disabilities LogoThe Mayor’s Office for People with Disabilities’ Employment Services Unit will be hosting its 9th annual College Summit for Students with Disabilities.

Saturday, April 18, 2015

MOPD Field Office

2102 W. Ogden Ave.

Chicago, IL 60612

At this event MOPD hopes to expose students with disabilities to the myriad of options at their disposal when it is their turn to decide the next steps in their efforts to reach their desired goals.

What is CCC’s College to Careers (C2C) Program?
The partnerships between City Colleges and industry leaders, the CCC will provide detailed information on its Occupational Programs in six of the fastest-growing fields.

Hot breakfast will be served
Registration: 8:30 am
Program: 9:00 am – 1:30 pm

For more information:
Ph: 312.746.5743
TTY: 312.746.5713
Fax: 312.746.5749

Reasonable Accommodations requests
Pre-registration through 4/13/15 – On site registration available

ODLSS presents Parent Empowerment Expo

FAMILY & SCHOOL PARTNERSHIP FORUMS to learn about CPS’ODLSS presents Parent Empowerment Expo Diverse Learner Conference and Resource Fair

Chicago Public Schools’ Office of Diverse Learner Supports and Services (ODLSS) is inviting families of diverse learners to attend its annual education conference and fair.  Come out and learn about ODLSS special education supports and services, get information about local and community resources and meet other families.


  • Resource Fair for Parents 
  • Transitioning to Adult Services Clinic 
  • IEP Review Clinic 
  • Parent Workshops

Work present in English and Spanish

FREE! Continental breakfast and lunch provided

Saturday, March 21, 2015

Event Check-In 8:00 am  – 9:00 am

Event and Resource Fair: 9:00 am – 2:00 pm

George Westinghouse College Prep

3223 W. Franklin Blvd.

Chicago, Il 60624

Register Today!  Space is limited

This event is for CPS families of diverse learners ages preschool through high school.

*We recommend, where possible, to make this an adult only event.

The event format is conference style and the workshop sessions are not ideal for children.  Child care is not available.   For more information go to or .

Using Technology to Support College Students with Intellectual Disabilities

think college image link to its webinar Upcoming webinars from Think College! The next one is coming
up on January 27th – register now! The cost for each one hour
webinar is $45.00, and all registrants has access to the live
webinar as well as a recording to listen to later.

REGISTER early, space is limited.

Using Technology to Support College Students with Intellectual Disabilities Tuesday, January 27, 2015, 3-4 pm Eastern Presented by: Lori Cooney, Think College and Phyllis Brodsky, University of Arizona

Two well-respected technology experts will share the benefits
of using emerging technologies and educational trends in
secondary and postsecondary education by providing a plethora
of examples of Web 2.0 tools and specific apps on mobile
devices to enhance learning in TPSID programs. Success stories
about student and programmatic use of these technologies will
also be highlighted.

Participatory Action Research Monday, February 23, 2015, 3-4
pm Eastern Presented by: Maria Paiewonsky, Think College

This session will describe how college students with
intellectual disabilities are conducting research into their
experiences in college using Participatory Action Research
strategies. Examples of research studies that have been
conducted will be discussed, and a free downloadable guide to
supporting participatory action research on college campuses
will be shared.

Inclusive Campus Communities Tuesday, March 24, 2015, 3-4 pm
Eastern Presented by: Melissa Jones, Northern Kentucky
University and Molly Boyle, Think College

Several people working in postsecondary education programs for
students with ID have been engaged in an ongoing discussion
related to the creation of truly inclusive campus communities.
In this webinar, they will share promising practices that
support inclusion.

Vocational Rehabilitation Supports for College Students with
Intellectual Disabilities Thursday, May 21, 2015, 3-4 pm
Eastern Presented by: Maria Dragoumanos, Think College

Several Transition and Postsecondary Education Programs for
Students with ID (TPSID) projects have developed innovative
agreements with Vocational Rehabilitation (VR) in their
respective states. This webinar will share the details of
those agreements and give examples of how VR is supporting
postsecondary education for students with ID.