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Accessible Healthcare: �ADA Compliance and Individualized Support for Parents with IDD

Welcome to �this eLearning module:

This module is part of TASP’s series on Working Effectively with Parents with IDD in Healthcare.

www.achancetoparent.net

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Welcome!

This training module navigates the intricacies of ADA requirements in healthcare institutions, shedding light on the legal frameworks and ensuring individualized support for parents with Intellectual and Developmental Disabilities (IDD).

Participants will delve into understanding reasonable accommodations, learning how to arrange and implement them effectively while building rapport and coordinating healthcare support for enhanced patient experiences.

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Objectives�

In this module, you will:

Gain knowledge of the ADA and the requirements of various health institutions
Understand how laws and regulations guarantee individualized support
Understand what reasonable accommodations means and looks like for a parent with IDD
Practice making reasonable modifications for parents with IDD

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Americans with Disabilities Act

The Americans with Disabilities Act (ADA) is a federal civil rights law that prohibits discrimination against people with disabilities. Health care organizations that provide services to the public are covered by the ADA.

It was signed into law in 1990 with the aim of ensuring equal opportunities and access to services, employment, and public accommodations for people with disabilities.

The ADA is divided into five titles, each addressing different aspects of public life, and it has had a significant impact on various sectors, including healthcare.

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Americans with Disabilities Act in Healthcare Settings

While the ADA generally addresses the rights of individuals with disabilities, there is a specific recognition of the rights of parents with disabilities, including those with intellectual disabilities.

The ADA emphasizes that individuals with disabilities, including parents, should not be denied the opportunity to participate in or benefit from services, programs, or activities due to their disability.

This extends to healthcare services, and healthcare providers are expected to make reasonable accommodations to ensure equal access for parents with intellectual disabilities in the context of their healthcare needs.

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Americans with Disabilities Act in Healthcare Settings

In short, the ADA requires that public entities make reasonable modifications to policies, practices, and procedures to ensure equal access for individuals with disabilities.

Healthcare providers must provide reasonable accommodations to individuals with disabilities to ensure they have an equal opportunity to benefit from healthcare services.

This means if their child is getting healthcare services, the PARENT with the disability is entitle to rights under the ADA.

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Does the ADA apply to my healthcare setting?

YES!!

As noted by the ADA National Network:

“Health care agencies run by state and local governments are covered under Title II of the ADA. Health care organizations run by private businesses or nonprofit organizations are covered under Title III of the ADA. All places covered by the ADA must provide access to their facilities and programs for people with disabilities.”

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Why is it important?

Failure to comply with the ADA can lead to legal action, including lawsuits, fines, and requirements to make necessary changes to policies and practices.

It is essential for healthcare providers to be aware of and fulfill their legal obligations under Titles II and III to ensure equal access and non-discrimination for individuals with disabilities in healthcare settings.

In addition, it is the right thing to do to ensure individuals with intellectual disabilities have full access to services and supports and create a culture of inclusivity.

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Why is it important?

That sounds easy enough, but as noted in the presentation Challenges and Opportunities: Lessons Learned from ADA Coordinators Working within Diverse Healthcare Organizations, “staff and clinicians are often unaware of requirements and only see the burden of providing accommodations.”

They go on to note that “The organization at all levels need to understand the need for and prioritize providing accessible care. When accessibility is a part of the overall mission of organization, participants saw more success in their initiatives.”

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Why is it important?

In a survey conducted by TASP about their experiences accessing healthcare, parents regularly noted the need for providers to understand and adhere to the ADA. It doesn’t often happen, and parents know and feel that:

“Physical access is not ‘extra’ it is the law.”
“When I ask my doctor to accommodate my disability, they should not be allowed to just say no. “
“Train first point of contacts. Receptionists must understand ADA, must understand additional support or modifications are sometimes needed.”
“Accommodations that would be obvious to me but are not providers.”
“They straight up refuse accommodations under the ADA”

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“Ignorance of ADA compliance(s) should not be acceptable at this point in our growth as a culture.” – Survey Respondent

Parents demand that providers know and understand the Americans with Disabilities Act (ADA). This allows their basic rights to be met. Tailoring services to meet individual needs is a way to provide reasonable accommodations.

The ADA requires that health care entities provide full and equal access for people with disabilities.

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How can you meet ADA Requirements?

While many people think about physical access, like ramps and elevators, when they think of the ADA, it is so much more than that.

Full and equal access can be achieved through:

Reasonable Modifications of Policies, Practices, and Procedures. Adjusting policies, practices, and procedures, if needed, to provide goods, services, facilities, privileges, advantages, or accommodations.
Effective Communication. Making communication, in all forms, easily understood.

AND

Accessible Facilities. Ensuring physical accessibility.

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How can you meet ADA Requirements?

Some modifications may require making physical changes to your space, but many are simple, and only need minor changes to practices (and sometimes to beliefs).

Let’s think about a few examples of working with a parent with an intellectual disability, and how you can meet ADA Requirements by making reasonable accommodations to your practices.

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How can you meet ADA Requirements?�Making simple reasonable accommodations

A parent with sensory needs gets overwhelmed in the waiting room. How could you accommodate their needs?

Ask them what could be helpful
You could offer an early appointment to a patient with sensory needs so that fewer people will be in the office and noise will be minimal.
Have them go straight to an exam room when they arrive, so they don’t need to spend extra time in the waiting room.

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How can you meet ADA Requirements?�Making simple reasonable accommodations

A parent with IDD is bringing in their child and needs help completing paperwork, but your office has a “no helping with paperwork policy.” How can you meet this family’s needs?

You can modify your policy requiring patients to complete their own paperwork, so that staff can complete intake paperwork for a person with an intellectual disability who requests assistance to fill out the paperwork.
You can offer to send paperwork ahead of time so someone can support the parent to complete the paperwork.
You can ask the parent if there are any updates since their last visit, but not require them to complete all paperwork every time they come.
If you have a health care portal for patients, make it easy-to-read, plain language, and accessible for parents with IDD.

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How can you meet ADA Requirements?�Making simple reasonable accommodations

A parent with learning differences is bringing in their child in for their well-child visit and wants to understand early childhood milestones.

Create plain-language early childhood materials
Use visuals to show the parent what is age appropriate for the child

A parent with learning differences is in your office and doesn’t understand the early childhood milestones pamphlets you have. You don’t have any plain-language materials. What can you do?

Use simple drawings or pictures to explain
Write down in plain language
Tell the parent you will follow-up with them and provide plain-language materials (and then make sure you do!)
When they leave, make a plan to obtain or create plain-language materials.

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How can you meet ADA Requirements?�Making simple reasonable accommodations

A parent with autism has trouble processing information, or needs extra time to process, but wants to take part in their visit. What can you do to accommodate their needs?

You could:

Ask them what they need!
Allow additional visit time so the parent can slowly process and think through answers.
Confirm answers, say them back to the parent.

From our survey, a parent shared this exact example, and what they’d want a provider to do to make the visit easier:

“I am autistic, and I can't process two-way communication during my visit. If I could have a reminder of what we are going to talk about and what we are not going to talk about it will help me, and significantly reduce time spent in office.”

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How can you meet ADA Requirements?�Making simple reasonable accommodations

What can ANY provider (reception, transportation, doctor, nurse, dentist, hygienist, phlebotomist, etc.) do to ensure they are meeting the needs of parent or individual with an intellectual disability?

Ask what they need to be successful!
Build rapport – take the time to talk to them (yes, that may mean needing a slightly longer visit!)
Slow down
Ensure they understand what you’re saying (have the parent say it back to you)
Simplify multi-step directions, offer one direction at a time.
Offer several forms of communication (plain language, visuals, easy read, braille, sign language interpreter, etc.)

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How can you meet ADA Requirements?�Making simple reasonable accommodations

One parent shared that providers can “slow down and make sure that all follow up tasks are understood. Prioritize and explain processes if things are multistep and multisystem involved.”

They went on to ask that providers “meet clients where they are at in the moment and modify their approach based on that.”

In addition, they suggested you “offer several forms of communication when giving instructions.”

If you are not certain the parent can process what you are saying, you could demonstrate the action you want them to take using an assistant to model following the directions.

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How can you meet ADA Requirements?�

It is not enough to change the practice of one person in the office.

Everyone in the building, from the first person the parent interacts with (on the phone, making an appointment), to the last person (the individual taking money at the parking garage) needs to work together and understand the rights of parents with disabilities, making modifications where needed.

Often, those changes start with leadership. Leadership buy-in is crucial to making a cultural shift towards ADA accountability and maintaining it.

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How can you meet ADA Requirements?�

Many hospitals and facilities have an ADA Coordinator, or a similar role. This is a good first step but should not be an add-on to their other jobs. That person must know the ADA and be committed to ensuring it’s implemented.

If an office is too small to have an ADA coordinator you could collaborate with other health providers in your area to train a person or reach out to a local hospital or near-by University.

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How can you meet ADA Requirements?�

Does your facility/practice/agency have someone who handles ADA Compliance?

If you don’t know, how could you find out?

How does your facility/practice/agency engage with individuals with disabilities to ensure they are part of the planning process?

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Congratulations!! �You’ve finished the course. �Check out the Additional Resources tab�

Author: Chelsea Tighe, Colleen Downes, and Cathy Haarstad –TASP

Reviewers:

Lindsay Brillhart

Ivanova Smith

Quiana Mayo

Jamie Junior

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Additional Resources - Organizations

The Association for Successful Parenting – supports parents with IDD through education, advocacy, and support. TASP conducts training for professionals and supports parents with IDD to advocate and share their stories: https://achancetoparent.net/

National Resource Center for Parents with Disabilities conducts research and provides training and technical assistance to improve the lives of parents with disabilities and their families. https://heller.brandeis.edu/parents-with-disabilities/

Proud Parents Connecticut offers plain language resources chosen by parents with differing abilities to help parents be the best parents they can be. https://www.proudparents.info/

Self Advocates Becoming Empowered (SABE): National self-advocacy organization. https://www.sabeusa.org /

Institute for Exceptional Care (IEC) works to make healthcare better and safer for people with intellectual and/or developmental disabilities. https://www.ie-care.org/

The National Center for Disability, Equity, and Intersectionality’s goal is to lead the nation’s charge to identify and reduce life-limiting inequities in healthcare, community living, and justice for people with disabilities. https://thinkequitable.com/

American Academy on Developmental Medicine and Dentistry is a non-profit, membership organization of interdisciplinary health professionals — including primary physicians, medical specialists, dentists, optometrists, nurses and other clinicians — committed to improving the quality of healthcare for people with intellectual & developmental disabilities (IDD).: https://www.aadmd.org/

National Council on Disabilities, Rocking the Cradle Report on Parents with Disabilities:

https://www.ncd.gov/publications/2012/Sep272012

The Arc of the United States: https://thearc.org/position-statements/parents-with-intellectual-developmental-disabilities/