Privacy Policy

Last Updated April 19, 2023

Easter Seals, Inc. (d/b/a "Easterseals") ("we," "our," or "us") understands that data privacy and the protection of personal information is important to you. This Privacy Notice explains how we collect, use and share your personal information, and your rights and choices regarding the personal information we collect about you.

Please read this Notice carefully to understand our policies and practices regarding your personal information and how we will process it. You can also click on the links below to navigate to a specific section.

Scope of Notice
Personal Information Collection
How We Use Personal Information
How We Disclose Personal Information
Easterseals Affiliate Members
Links to Other Sites
Security of Personal Information
Transmission of Health-Related Information
Retention of Personal Information
Your Rights and Choices Regarding your Personal Information
Cookies
International Transfers of Personal Information
Information from Children
Changes to this Notice
Contact Us

1. Scope of Notice

This Privacy Notice applies to all donors, members, website visitors, business partners, employees, job applicants, and individuals who otherwise interact with Easterseals whom we collect personal information from. We often refer to your interactions with us as using our "services" throughout this Notice.

2. Personal Information Collection

We collect a variety of information as part of our operations, including personal information and other information. "Personal information" is any information that identifies, relates to, describes, is reasonably capable of being associated with, or could reasonably be linked, directly or indirectly, with an identifiable individual.

a. How We Collect Personal Information

Easterseals collects information, including personal information, from and about its donors, event attendees and program participants, individuals who interact with our affiliate members, employees and job applicants, individuals who visit our website and other individuals who choose to interact with us. We collect information from or about you in the following ways:

Directly from you. We collect information directly from you when you make a donation, create a user profile on our website, attend an event or program we are offering, apply for employment or gain employment with us, when you visit our website, and when you otherwise voluntarily submit or provide information to us.
Automatically. When you visit and interact with our website, we collect information automatically through cookies. For more information about cookies on our website, please visit the section below titled "Cookies."
From our Affiliate Members. We rely on our affiliate members to provide us with information about the individuals they provide services to and interact with so that we can understand the impact of our and our affiliate members' programs and services, yield actionable insights, and drive future-forward decision making to ensure that our services and programs make the most impact in the communities we serve.
From Other Sources. We may collect information about you from other sources and we may combine information from other sources with information we collect through our services or interactions with you. Examples of the other sources we most frequently collect information from includes national donor data bases and registries, and companies that compile mailing lists about individuals.

b. Types of Personal Information We Collect

The types of personal information we collect depends on how you interact with us, including whether the interaction is through one of our affiliate members or directly with us. In many cases, the personal information we collect will be apparent from the context in which you provide the information.

We collect the following types of personal information from you depending on how you interact with us (i.e., donor, employee, etc.).

Categories of Personal Information	Categories of individuals
Contact Information. This includes your name, mailing address, email address, social media handle, or other similar identifiers.	Donors Employees and job applicants Website visitors Event attendees Program participants Individuals who interact with our affiliate members Easterseals affiliate member users
Identification Information. This includes your SSN, driver's license number, passport number, or similar legal identification information.	Employees and job applicants
Profile Information. This includes information about your activity and interactions with us, including your donor tendencies and donation history, information you voluntarily provide to us or that we collect from other sources regarding your interests, preferences, and characteristics. We compile this information we collect about you to better understand you.	Donors Website visitors Event attendees Program participants Individuals who interact with our affiliate members Easterseals affiliate member users
Health Information. This is information about your health, disability, or medical condition which may include "Protected Health Information" (PHI).	Event attendees Program participants Individuals who interact with our affiliate members Employees and job applicants (if you choose to participate in our group health plan)
Financial Information. This includes information about your wealth and financial status, income, credit card, bank account, or payment information.	Donors Employees and job applicants Individuals who interact with our affiliate members
Location Information. This includes information about your location.	Donors Website visitors Easterseals affiliate member users
Professional or Employment-Related Information. Current or past job history or performance evaluations.	Employees and job applicants Affiliate clinical and non-clinical service providers
Internet or other similar network activity. Browsing history, search history, information on your interaction with a website, application, or advertisement.	Website visitors Donors Easterseals affiliate member users
Interaction Information. This includes information about your attendance at events we host or programs we sponsor, as well as information about correspondence with us and other ways you interact with us.	Donors Event attendees Program participants Website visitors Individuals who interact with our affiliate members Easterseals affiliate member users
Sensitive Personal Information. We may collect certain sensitive personal information including race, gender, and age information. This information is collected in aggregate form.	Employees and job applicants Individuals who interact with our affiliate members Easterseals affiliate member users

We may not collect all of the above categories of information from each category of individual who interacts with us. Please note that if you voluntarily provide us with additional information when you interact with us that does not fit one of these categories of information or individuals set forth above, we will collect the information and use it for the purposes you direct or that we disclose to you.

As noted above, in certain circumstances, we may also collect "Protected Health Information." "Protected Health Information" ("PHI") is individually identifiable health information. We sometimes collect PHI when we gather information about the effectiveness of our programs in order to understand whether a program that we or our affiliate members offered resulted in improved outcomes for the individuals or communities our programs are designed to serve.

3. How We Use Personal Information

We use personal information for our legitimate business purposes to further our mission and for other purposes disclosed to you at the time data is collected. More specifically, we use personal information in the following ways:

Provide our services, programs, and events to the communities and individuals we serve.
Send you confirmations about event or program registration, or donations.
Process donations and gifts made to Easterseals or our affiliate members.
Understand our donor base and potential donors.
Measure the effectiveness of our services, programs, and events, including services, programs, and events offered by our affiliate members.
Communicate with you about our services, programs, events, happenings, and news.
Respond to your comments, inquiries, and customer service requests.
Market our events, services, programs, and potential donor opportunities to you. You may opt-out of marketing communications at any time.
Provide you with employment, or consider you for employment with Easterseals.
Process payroll and other benefits afforded to our employees.
Improve and personalize our content and services.
Monitor and analyze trends regarding our services, programs, and events, including services, programs, and events offered by our affiliate members.
Protect against and prevent fraud, unauthorized transactions, and manage risk exposure.
Enforce our legal rights and agreements.
Comply with applicable legal requirements.
Carry out any other purpose you consent to, that we disclose to you at the time your data is collected, or that you direct us to.

We may aggregate and de-identify personal information we collect from you to understand the effectiveness of our programs, services, and offerings, as well as to understand our donor base and donor trends. When we aggregate or de-identify information, it is no longer personally identifiable.

4. How We Disclose Personal Information

Easterseals may share your personal information in the following circumstances, and as otherwise described in this Notice:

Affiliate Members. We share information with our affiliate members in order to understand and improve the impact of our and our affiliate members' programs, services, and offerings. Please see the section below titled "Easterseals Affiliate Members" for more information.
Service Providers, Vendors, and Consultants. We rely on third parties to perform functions on our behalf. Some of these service providers include marketing service providers, payment service providers who help us process donations and pay our employees, cloud storage providers, website hosting platforms, client relationship management providers, HR or employee benefits providers, and content providers. We endeavor to ensure written agreements are in place with all service providers, vendors, and consultants where feasible and appropriate. All service providers, vendors, and consultants are required to use the information we disclose to them at our direction and only for the purpose(s) for which it was disclosed to them, and they are required to adhere to security and confidentiality measures.
List Rental and Exchange Program. We may share certain information about our donors with national donor registration and list service providers in order to grow our donor base and more effectively reach current and prospective donors. If you do not wish for your information to be shared with these third parties, you may opt-out by contacting us via a method set forth in the "Contact Us" section below or by visiting our website and contacting us through a means listed on our website. If you would like to know which third parties participate in the list rental and exchange program, you may also contact us via one of the methods listed below.
Law Enforcement Agencies, Courts, Regulators, Government Authorities, or Other Third Parties. We may disclose your information: 1) to apply with a legal obligation or court order; 2) when we believe in good faith that the law requires it; 3) at the request of governmental authorities conducting an investigation; 4) to verify or enforce our policies, procedures, terms of service, and other agreements, or to protect the rights, property, safety, and security of Easterseals, our members, vendors, business partners, service providers, affiliate members, website visitors, or the public; 5) to respond to an emergency; or 6) when we believe it is necessary or appropriate to prevent physical harm or financial loss, or in connection with an investigation of suspected or actual illegal activity.
Successor Entities, Buyers, Transfers and Mergers and Acquisitions. We may disclose your information to a buyer, potential buyer, successor in interest, or to an organization in connection with a bankruptcy, transfer, merger or acquisition, or other transfer of some or all of Easterseals' or an affiliate's assets, which may include your information. If this occurs, we will endeavor to ensure that the successor entity uses your personal information in accordance with this Privacy Notice, or provides you with notice and a choice about future use of your personal information.

5. Easterseals Affiliate Members

Easterseals has a number of affiliate members throughout the United States who interact directly with the populations we serve by bringing Easterseals' mission and work directly into the community in which the affiliate member operates. While our affiliate member organizations are associated with and use Easterseals branding, they may have their own practices regarding how they collect, use, share, and retain information when you interact with them.

As described above, affiliate members share information with us, and we share information with our affiliate members. This information sharing occurs so that we can understand the impact of our and our affiliate members' programs and services, yield actionable insights, and drive future-forward decision making so that we can continue to further the Easterseals' mission of equity, inclusion, and access for individuals with disabilities.

6. Links to Other Sites

Easterseals' website may contain links to other sites, including to our affiliate members, as well as links to non-affiliated third parties, such as social networks or business partners. These linked sites may have personal information collection, use, and disclosure practices that differ from Easterseals' practices. We encourage you to review the privacy policies of websites that you visit before sharing your personal information with them. Please also be aware that if you disclose personal information, PHI, or other sensitive information through public forums, at an event, or on online message boards, this information may be used by others. We take no responsibility for the content, security, or confidentiality of any information posted on or conveyed in these public spaces.

7. Security of Personal Information

Easterseals knows that information security is of the utmost important to our donors, affiliate members, website visitors, and individuals whose information we collect. We maintain reasonable technical, administrative, physical, and organizational safeguards in proportion to the sensitivity of information we collect that are designed to prevent unauthorized access, use, and disclosure of personal information.

However, no electronic data transmission or processing of personal information is completely secure, so we cannot guarantee the security of personal information. We encourage you to assist us with securing your personal information by using a strong password and not disclosing your login credentials, where applicable, to anyone. If we become aware of an incident that affects your personal information, we will investigate and comply with all reporting obligations.

8. Transmission of Health-Related Information

Easterseals understands the sensitivity of collecting and using health-related data. It is not Easterseals' intent to collect personally identifiable health-related information or PHI. If we do collect personally identifiable health-related information or PHI, it will not be used by or shared with entities other than Easterseals or our affiliate members, unless the information is de-identified. Any transfer of personally identifiable health-related data between Easterseals organizations will take place in a secure environment with access allowed only to certain qualified employees of Easterseals. Easterseals will comply with all regulations set forward by the Health Insurance Portability and Accountability Act (HIPAA). To learn more about HIPAA, visit the U.S. Department of Health and Human Services Office for Civil Rights.

9. Retention of Personal Information

We will retain your information only for as long as necessary to achieve the purpose for which it was collected. This may mean that we will continue to retain certain information even after we stop providing our services directly or indirectly to you, after you delete your user profile, or cease interacting with us, as required by law or for our legitimate business purposes. We may also retain de-identified, aggregated, or anonymous information that does not identify a particular individual. In all cases where we retain data, we do so in accordance with limitation periods and record retention obligations that are imposed by applicable law.

10. Your Rights and Choices Regarding your Personal Information

Easterseals offers various rights that are consistent with state consumer privacy laws. Easterseals offers the option to access, correct, and delete your personal information. If you are a registered user of our website, you can access your Easterseals profile and update your contact information and user preferences by clicking here. Upon your request, we will delete, aggregate, or de-identify personal information related to you that is retained in our organizational databases, unless we are required to continue to retain the information in an identifiable format. To exercise your right to deletion, or to modify or correct your information other than through the link above, please contact us via a method set forth in the below "Contact Us" section.

You can also change your communication preferences and opt-in or opt-out of marketing communications from Easterseals. To opt-out of receiving email communications, postal mail or from participating in the list rental and exchange program, or to request a disclosure of list rental and exchange information, please follow the directions below.

Email: If you are a registered user of easterseals.com, login to change your email preferences.You may also opt out of certain non-essential marketing email communications using the "unsubscribe" link at the bottom of the email.
Postal Mail: Opt-out of postal mail solicitations
List Rental and Exchange: Opt-out of list rental and exchange program
Disclosure Request: Request disclosure of list rental and exchange practices

We will endeavor to fulfill all requests within a reasonable timeframe.

11. Cookies

Our website uses or may use cookies, web beacons, pixel tags, and similar technologies (collectively, "cookies"). Cookies are small text files stored directly on a website visitor's computer or mobile device that automatically collect certain information from users such as browser type, IP address, time spent online, pages visited, referring URL, and additional aggregated website traffic data. We also rely on partners to provide features of our services, which may involve using cookies.

We use cookies for the following purposes:

Functionality. These cookies are necessary for us to ensure that the website functions properly.
Security. These cookies are necessary for us to mitigate the risk of data breaches and similar attacks by ensuring that requests are submitted to our website from proper domains.
Authentication. These cookies allow us to authenticate user requests and to maintain session information related to users.
Preference. These cookies allow our website to remember which events you have signed up or registered for, the products you place in your shopping cart, and to recognize your device.
Advertising. These cookies allow us to provide you with more relevant advertisements.
Analytics. These cookies enable us to learn more about how users and visitors interact with our website, including pages visited, how much time is spent on each pages, and similar information. We use this information in aggregate.
Third-Party. These cookies are placed by third parties such as Google and social media networks. These cookies track and monitor how you interact with our services and other websites, provide us insight into how you interact with our website (such as analytics), facilitate account registration and login, and also enable the sharing of content from our services to these third parties. We do not control the data use or sharing practices of these third parties. If you do not wish to accept third party cookies, we encourage you to update your browser settings accordingly.

The use of cookies has become standard among website operators. Most browsers are initially set to accept cookies. You can usually set your browser to refuse cookies that are not necessary or to indicate when a cookie is being set. To understand your options regarding cookies, you can visit the help section of your web browser, or take a look at the links below:

Chrome: https://support.google.com/chrome/answer/95647?hl=en
Firefox: https://support.mozilla.org/en-US/kb/cookies-information-websites-store-on-your-computer
Edge: https://support.microsoft.com/en-us/microsoft-edge/delete-cookies-in-microsoft-edge-63947406-40ac-c3b8-57b9-2a946a29ae09
Internet Explorer: https://support.microsoft.com/en-us/windows/delete-and-manage-cookies-168dab11-0753-043d-7c16-ede5947fc64d
Safari: https://support.apple.com/guide/safari/manage-cookies-sfri11471/mac

If you refuse cookies, you may not be able to use certain functions on our website and our website may not function as smoothly as it does when cookies are enabled.

12. International Transfers of Personal Information

Easterseals and all of its affiliate members are located in the United States, and all programming offered by Easterseals and its affiliate members occurs in the United States. Because of the global nature of the internet, the Easterseals website may be accessible from jurisdictions other than the United States, even though Easterseals does not operate, provide, or market its services outside of the United States. If you access the Easterseals website outside of the United States, your information will be transferred to and processed in the United States. Since the data protection laws of various countries differ, information transferred to the United States may not be subject to the same level of protection as the jurisdiction in which you reside. If you choose to access our website from a jurisdiction outside the United States, we rely on your consent to transfer the data to the United States. To the extent you do not consent to data transfers to the United States, please do not provide us with your personal information or visit our website.

13. Information from Children

Our website is not directed towards children under the age of 13. We do not knowingly collect personal information from anyone under the age of 13 through our website without parental consent. If you become aware that we have collected personal information from an individual under the age of 13 through our website without parental consent, please let us know so that we can take appropriate action.

14. Changes to this Notice

We may update this Privacy Notice from time to time. If we make material updates to this Notice, we will endeavor to provide you notice by placing a prominent notice on this website and/or sending an email notification of the change. We will also update the "last updated" date at the top of this policy. Any changes will be effective immediately on posting unless otherwise indicated. Continued use of our services after updates to our Notice will be deemed consent to the changes.

15. Contact Us

If you have any questions about this Notice or our information practices, please contact us by emailing us through this link or directly at info@easterseals.com, calling us toll-free at 800-221-6827, or writing to us at:

Easter Seals, Inc.
Attn: Privacy Manager
141 W. Jackson Blvd
Suite 1400A
Chicago, IL 60604

HIPAA NOTICE OF PRIVACY PRACTICES AT EASTER SEAL SOCIETY OF WESTERN PENNSYLVANIA

Effective Date: April 12, 2003

THIS NOTICE DESCRIBES HOW MEDICAL INFORMATION ABOUT YOU MAY BE USED AND DISCLOSED AND HOW YOU CAN GET ACCESS TO THIS INFORMATION.
PLEASE REVIEW IT CAREFULLY.

If you have any questions about this notice, please contact Easter Seal Society of Western Pennsylvania’s Privacy Officer at (412) 281-7244.

Privacy Officer’s Contact Information:

Tina L. Outrich
Vice President of Programs/Services
2525 Railroad Street,
Pittsburgh, PA 15222

WHO WILL FOLLOW THIS NOTICE

This notice describes the privacy practices of Easter Seal Society of Western Pennsylvania and all of its Affiliates and other persons listed below (together, “Provider” or “we”). “Affiliates” means:

Any health care professional authorized to enter information into your medical chart.
All departments and units of the organization and its affiliates.
Any member of a volunteer group we allow to help you while you are receiving care from the Provider.
All employees, staff, Board Members and other Provider personnel.

All of these persons and entities follow the terms of this notice and may share protected health information with each other for treatment, payment or provider operations purposes as described in this notice.

OUR PLEDGE REGARDING PROTECTED HEALTH INFORMATION

We understand that protected health information about you and your health is personal. We are committed to protecting your protected health information. In order to provide you with quality care and to comply with legal requirements, we create a record of the care and services you receive from the Provider. This notice applies to all of the records of your care maintained by the Provider. Your other health care providers, such as your personal doctor, may have different policies or notices regarding the use and disclosure of your protected health information created and maintained in the doctor’s own office or clinic.

This notice provides the ways in which the Provider may use and disclose your protected health information. It also describes your rights and certain of the Provider’s obligations regarding use and disclosure of your protected health information.

The provider is required by law to:

safeguard your protected health information;
give you this notice of our legal duties and privacy practices with respect to your protected health information;
follow the terms of this notice as currently in effect; and
notify you of any changes to this notice.

HOW WE MAY USE AND DISCLOSE PROTECTED HEALTH INFORMATION ABOUT YOU

The following categories describe different ways that we “use” and “disclose” you protected health information. Each category is followed by an explanation and in some instances an example. For purposes of this notice, the term “use” refers to protected health information that is used within the Provider for your treatment, the Provider’s operations, or the payment of your care. The term “disclose” refers to protected health information that is given to outside entities for one of the purposes described in this notice. Whether your protected health information is used or disclosed, the use or disclosure will fall within one of the categories listed below and will be used or disclosed only in the minimal amount necessary to carry out the purpose. The term “may” means that the Provider is permitted under federal law to use or disclose this information without obtaining an additional or specific authorization from you to do so. Even though the Provider may be permitted to use or disclose information in a given instance, it does not mean that we will use or disclose the information. We will still try to assure that any use or disclosure is in your interest or is consistent with practices in the health care field.

For Treatment. We may use and disclose protected health information about you to provide you with medical treatment or services. We may disclose protected health information about you to doctors, nurses, technicians, medical students, and Provider personnel who are involved in taking care of you at the Provider. For example, a doctor treating you for an injury may need to know if you have diabetes because diabetes may slow the healing process. In addition, the Provider may need to tell the dietician if you have diabetes so that the dietician can arrange for appropriate meals. Different departments of the Provider also may share protected health information about you in order to coordinate the different things you need. We also may disclose protected health information about you to people outside of the Provider who may be involved in your medical care when you are absent from the Provider, such as family members, clergy, providers of day services, volunteers, Independent Support Coordinators, case managers, respite care workers and others we have engaged to provide services that are part of your care.

For Payment. We may use and disclose protected health information about you so that the treatment and services you receive from the Provider or other providers may be billed to and payment may be collected from you, the government, an insurance company or a third party. For example, we may disclose information to the county or state mental health and/or mental retardation agency in order to receive payments for your treatment. We may also tell your insurer or governmental payer about a treatment you are going to receive to obtain prior approval or to determine whether your plan or the government will cover the cost of the treatment.

For Health Care Operations. We may use and disclose protected health information about you for Provider operations or operations of another provider or payer. These uses and disclosures are necessary to run the Provider and make sure that all of our clients receive quality care. For example, we may use protected health information to review our treatment and services and to evaluate the performance of our staff in caring for you. We may also combine protected health information about many Provider clients to decide what additional services the Provider should offer, what services are not needed, and whether certain new treatments are effective. We may also disclose information to doctors, nurses, technicians, medical students, direct care providers, behavioral therapists, special therapists, and other Provider personnel for review and learning purposes. We may also disclose information in order to comply with our incident reporting requirements under state, local, or federal law. We may also combine the protected health information we have with the protected health information from other providers to compare how we are doing and see where we can make improvements in the care and services we offer. We may remove information that identifies you from this set of protected health information so others may use it to study health care delivery without learning who the specific clients are.

Health Care Quality Units and Other Quality Review Organizations. We may disclose information to the Pennsylvania Department of Public Welfare, the Office of Mental Retardation, and other state and county mental health and mental retardation agencies through their appointed agents, including Health Care Quality Units and independent monitoring groups, in order to comply with federal, state and local laws and regulations.

Appointed Reminders. We may use and disclose protected health information to contact you as a reminder that you have an appointment for treatment or medical care at the Provider.

Treatment Alternatives. We may use and disclose protected health information to tell you about or recommend possible treatment options or alternatives that may be of interest to you.

Health-Related Benefits and Services. We may use and disclose protected health information to tell you about health-related benefits or services that may be of interest to you.

Fundraising Activities. We may use contact information, such as your name, address and phone number, and the dates you received treatment or services from the Provider to contact you and your family members in an effort to raise money for the Provider. We may disclose this contact information to a foundation related to the Provider so that the foundation may contact you and your family members in raising money for the Provider. If you do not want the Provider or the foundation to contact you or your family members for fund raising efforts, you must notify the Privacy Officer in writing.

Provider Directory. We may include certain limited information about you in the Provider directory while you are a client of the Provider. This information may include your name, location at the Provider, your general condition, and your religious affiliation. The directory information, except for your religious affiliation, may also be released to people who ask for you by name. Your religious affiliation may be given to a member of the clergy, such as a priest or rabbi, even if they do not ask for you by name. This is so family, friends, and clergy can visit you at the Provider and generally know how you are doing.

Individuals Involved in Your Care or Payment for Your Care. We may disclose protected health information about you to your family members, your personal friends or any other person identified by you, but we will only disclose information that we feel is relevant to that person’s involvement in your care or the payment for your care. If you are feeling well enough to make decisions about your care, we will follow your directions as to who is sufficiently involved in your care to receive information. If you are not present or cannot make these decisions, we will make a decision based on whether we believe it is in your best interest for a family member or friend to receive private health information and how much information they should receive. Obviously, we are inclined to provide greater information to close family members than to friends.

We may also disclose information to disaster relief agencies or to family, friends or others in an effort to locate or identify members or personal representatives.

Research. Under certain circumstances, we may use or disclose protected health information about you for research purposes. For example, a research project may involve comparing the progress of all clients who received one therapy to those who received another, for the same condition. All research projects, however, are subject to a special approval process. This process evaluates a proposed research project and its use of protected health information, trying to balance the research needs with clients’ need for privacy of their protected health information. Before we use or disclose protected health information for research, the project will have been approved through the research approval process, but we may, however, disclose protected health information about you to people preparing to conduct a research project, for example, to help them look for clients with specific medical needs, so long as the protected health information they review does not leave the Provider.

In certain situations, we are required to ask your specific permission, such as when the researcher will have access to your name, address or other information that reveals who you are, or will be involved in your care at the Provider.

As Required By Law. We will disclose protected health information about you when required to do so by federal, state or local law. For instance, the Provider is obligated to report to public health officials the occurrence of certain communicable diseases, or acts of violence. Additionally, the Provider is required to report certain incidents to the Pennsylvania Department of Public Welfare.

To Avert a Serious Threat to Health or Safety. We may use and disclose protected health information about you when necessary to prevent a serious threat to your health and safety or the health and safety of the public or another person. Any disclosure, however, would only be to someone able to help prevent the threat.

Day Providers. We may use and disclose information about you if necessary to facilitate your application for admission to, or use of day programs such as supported employment and sheltered employment.

Residential Facilities. We may use and disclose information about you if necessary to facilitate your application for admission into, or use of residential facilities.

In-Home Services. We may use and disclose information about you if necessary to facilitate your application for, or use of in-home services.

Family Living Arrangements. We may use and disclose information about you if necessary to facilitate your application for admission into, or use of family-living arrangements.

Supports Coordinators. We may use and disclose information about you as necessary for supports coordinators and case managers to complete their duties for you.

Transfers. We may use and disclose information about you to another Provider to which you are being transferred or which is considering you as a transfer.

Employers. We may use and disclose information about you to an employer or prospective employer in connection with your application for, or continuation of employment.

SPECIAL SITUATIONS

Organ and Tissue Donation. If you are an organ or tissue donor, we may release protected health information to organizations that handle organ procurement or organ, eye or tissue transplantation or to an organ donation bank, as necessary to facilitate organ or tissue donation and transplantation.

Military and Veterans. If you are a member of the armed forces, we may release protected health information about you as required by military command authorities. We may also release protected health information and foreign military personnel to the appropriate foreign military authority.

Workers’ Compensation. We may release protected health information about you for workers’ compensation or similar programs. These programs provide benefits for work-related injuries or illness. Under the privacy regulations, workers’ compensation claims are exempted from coverage, and thus we may release protected health information about you to your employer for workers’ compensation purposes.

Public Health Risks. We may disclose protected health information about you for public health activities. These activities generally include the following:

to prevent or control disease, injury or disability;
to report births and deaths;
to report child abuse or neglect;
to report reactions to medications or problems with products;
to notify people of recalls of products they may be using;
to notify a person who may have been exposed to a disease or may be at risk for contracting or spreading a disease or condition;
to notify the appropriate government authority if we believe a client has been the victim of abuse, neglect or domestic violence. We will only make this disclosure if you agree or when required or authorized by law.

Health Oversight Activities. We may disclose protected health information to a health oversight agency for activities authorized by law. These oversight activities include, for example, audits, investigations, inspections, and licensure. The federal government had determined that it must have access to this information to adequately monitor beneficiary eligibility for government programs (for example, Medicare or Medicaid), compliance with program standards, and/or civil rights laws.

Lawsuits and Disputes. If you are involved in a lawsuit or a dispute, we may disclose protected health information about you in response to a court or administrative order. We may also disclose protected health information about you in response to a subpoena, discovery request, or other lawful process by someone else involved in the dispute, but only if appropriate efforts have been made to tell you about the request or to obtain an order protecting the information requested.

Law Enforcement. We may release protected health information if asked to do so by a law enforcement official:

in response to a court order, subpoena, warrant, summons or similar process;
to identify or locate a suspect, fugitive, material witness, or missing person;
about the victim of a crime if, under certain limited circumstances, we are unable to obtain the person’s agreement;
about a death we believe may be the result of criminal conduct;
about criminal conduct at the Provider; and
in emergency circumstances to report a crime; the location of the crime or victims; or the identity, description or location of the person who committed the crime.

Coroners, Medical Examiners and Funeral Directors. We may release protected health information to a coroner or medical examiner. This may be necessary, for example, to identify a deceased person or determine the cause of death. We may also release protected health information about clients of the Provider to funeral directors as necessary to allow them to carry out their duties.

National Security and Intelligence Activities. We may release protected health information about you to authorized federal officials for intelligence, counterintelligence, and other national security activities authorized by law.

Protective Services for the President and Others. We may disclose protected health information about you to authorized federal officials so they may provide protection to the President, other authorized persons or foreign leads of state or conduct special investigations.

Inmates. If you are an inmate of a correctional institution or under the custody of a law enforcement official, we may release protected health information about you to the correctional institution or law enforcement official. This release would be necessary (1) for the institution to provide you with health care; (2) to protect your health and safety or the health and safety of others; or (3) for the safety and security of the correctional institution.

YOUR RIGHTS REGARDING MEDICAL INFORMATION ABOUT YOU

You have the following rights regarding protected health information we maintain about you:

Right to Inspect and Copy. You have the right to inspect and copy protected health information that may be used to make decisions about your care. Usually, this includes medical and billing records, but does not include psychotherapy notes.

To inspect and copy protected health information that may be used to make decisions about you, you must submit your request in writing to the Privacy Officer. If you request a copy of the information, we customarily charge a fee for the costs of copying, mailing or other supplies associated with your request.

We may deny your request to inspect and copy in certain very limited circumstances. If you are denied access to protected health information, you mat request that the denial be reviewed. Another licensed health care professional chosen by the Provider will review your request and the denial. The person conducting the review will not be the person who denied your request. We will comply with the outcome of the review.

Right to Append and Amend. If you feel that protected health information we have about you is incorrect or incomplete, you may ask us to append or amend the information. You have the right to request an amendment for as long as the information is kept by or for the Provider. If we do not agree to amend your information, you may add a supplemental statement to your records indicating why you believe the information should be changed. We will append or otherwise link your statement to your records.

To request an amendment, your request must be made in writing and submitted to the Privacy Officer. In addition, you must provide a reason that supports your request.

We may deny your request for an amendment if it is not in writing or does not include a reason to support the request. In addition, we may deny your request if you ask us to amend information that:

was not created by us, unless the person or entity that created the information is no longer available to make the amendment;
is not part of the protected health information kept by or for the Provider;
is not part of the information which you would be permitted to inspect and copy; or
is accurate and complete.

Right to an Accounting of Disclosures. You have the right to request an “accounting of disclosures.” This is a list of several types of the disclosures we made of protected health information about you.

To request this list or accounting of disclosures, you must submit your request in writing to the Privacy Officer. Your request must state a time period which may not be longer that six years and may not include dates before April 14, 2003. Your request should indicate in what form you want the list (for example, on paper, electronically). The first list you request within a 12-month period will be free. For additional lists, we may charge you for the costs of providing the list. We will notify you of the cost involved and you may choose to withdraw or modify your request at that time before any costs are incurred. The Provider will comply with your request within 60 days.

Right to Request Restrictions. You have the right to request a restriction or limitation on the protected health information we use or disclose about you for treatment, payment or health care operations. You also have the right to request a limit on the protected health information we disclose about you to someone who is involved in your care or the payment for your care, like a family member or friend. For example, you could ask that we not use or disclose information about a surgery you had.

We are not required to agree to your request. If we do agree, we will comply with your request unless the information is needed to provide you emergency treatment. To request restrictions, you must make your request in writing to the Privacy Officer. In your request, you must tell us (1) what information you want to limit; (2) whether you want to limit our use, disclosure or both; and (3) to whom you want the limits to apply, for example, disclosures to your spouse.

Right to Request Confidential Communications. You have the right to request that we communicate with you about medical matters in a certain way or at a certain location. For example, you can ask that we only contact you at work or by mail.

To request confidential communications, you must make your request in writing to the Privacy Officer. We will not ask you the reason for your request. We will accommodate all reasonable requests. Your request must specify how or where you wish to be contacted.

Right to a Paper Copy of This Notice. You have the right to a paper copy of this notice. You may ask us to give you a copy of this notice at any time. Even if you have agreed to receive this notice electronically, you are still entitled to a paper copy of this notice.

To obtain a paper copy of this notice, please call our Privacy Officer at 412.281.7244.

CHANGES TO THIS NOTICE

We reserve the right to change this notice. We reserve the right to make the revised or changed notice effective for protective health information we already have about you as well as any information we receive in the future. We will post a copy of the current notice at our site. The notice will contain on the first page, in the top right-hand corner, the effective date. In addition, each time you register at or are admitted to the Provider for treatment or health care services as a client, we will offer you a copy of the current notice in effect.

COMPLAINTS

If you believe your privacy rights have been violated, you may file a compliant with the Provider or with the Secretary of the Department of Health and Human Services. To file a complaint with the Provider, contact:

Tina L. Outrich
Vice President of Programs/Services
Easter Seal Society of Western Pennsylvania
2525 Railroad Street,
Pittsburgh, PA 15222

All complaints must be submitted in writing.

You will not be penalized for filing a complaint.

OTHER USES OF PROTECTED HEALTH INFORMATION

Other uses and disclosures of protected health information not covered by this notice or the laws that apply to us will be made only with your written authorization. If you provide us permission to use or disclose protected health information about you, you may revoke that permission, in writing, at any time. If you revoke your permission, we will no longer use or disclose protected health information about you for the reasons covered by you written authorization. You understand that we are unable to take back any disclosures we have already made with your permission, and that we are required to retain our records of the care that we provide to you.

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Communities Making Accessible Transportation: How We Can Work Together
Monday, April 15, 2024, 10:56 AM
Communities Making Accessible Transportation: How We Can Work Together

Monday, April 15, 2024, 10:56 AM

By Jeremy Johnson-Miller “How did you get here today?” For many, this may never be a second thought,…
By Jeremy Johnson-Miller

“How did you get here today?”

For many, this may never be a second thought, but for others, it is a daily reminder of the extra planning and reliance of others needed to get where they need to go. Many disabled people understand this well – whether it’s figuring out accessible public transit routes (Does this station have a working elevator? Does this bus route get me close to where I need to go?) or wondering if you will encounter ableism on your journey (Will a taxi pass me by when they see I use a wheelchair? Will people question my service animal?).

Even when someone reaches their destination, they may still encounter obstacles in their travel. A crack or broken sidewalk may not hinder someone who is not disabled, but for others it could mean they can’t use that route and must go blocks out of their way or even into the street to bypass the damaged pathways.

Transportation offers independence for people with disabilities, allowing them to get to school, work and social activities, but when one of these connections fails, it can disrupt their entire day or week.

Throughout my career, I met some amazing people who let me learn about life from their perspective.

Jeremy and Aunt Nancy

My passion for transportation started at an early age; my aunt Nancy had poor eyesight that barred her from driving, but that did not stop her from living a full life — she passed that life skill along to me. I would meet her downtown during summer breaks for lunch, picking out a book at the library and, of course, ice cream.

Michelle lives downtown and works several blocks away and uses a motorized wheelchair to traverse the city, but in the winter or during construction season, the path of travel is often blocked or unsafe. Michelle uses the phrase “the sidewalks are my roads” when speaking to city leaders about the importance of sidewalks for her to thrive, and if those fail, she is unable to succeed.

Immanuel lives and works along a bus route, but also values social life beyond work. Immanuel has used a wheelchair his entire life, but because of the limited hours of operation for transportation, he often says, “it’s like I am a 30-year-old with a curfew.” The bus does not operate after 10pm and they cannot go to a late movie or stay out late with friends.

Jeremy and Michelle

These are only a few stories from my 10-plus years working in transportation, but I have a motivation to keep going, nonetheless. People like Michelle and Immanuel, and of course Aunt Nancy, make me want to keep learning and showing up for those who cannot.

Part of my job at Easterseals is sharing ways all of us can make a difference in accessible transportation.

Here are a few actionable items:
- The work we can do starts off with being aware of our surroundings and making sure there is adequate space for everyone to navigate walkways or paths.
- If you notice obstacles blocking a sidewalk, driveway, or building entrance, find the appropriate person to move them.
- If you are a business owner, make sure your signage or furniture is not blocking a path.
- Notice an elevator is out of order? Tell the building staff, even if you don’t need the elevator.
- During snow season, make sure your sidewalks are shoveled.
- Attend town meetings to advocate for safe crosswalks and paths of travel.
Working for an organization like Easterseals has allowed me to put that knowledge into action and continue to create an accessible world for all. Easterseals offers vital resources like customized training and technical expertise on the Americans with Disabilities Act for transportation providers; develops resources to support organizations in their efforts to connect with transportation and mobility services in their community; and identifies organizations in your state, region, or local community that could connect you to the most appropriate transportation services and support the development of coordinated transportation networks.

To make safer, more accessible communities, we must plan transit alongside the disability community. They are the experts on their needs — we can connect with them to advocate and get the attention of government and transit officials. This is and should be a community effort as it benefits all of us to have accessible public transportation options.

To learn more about the Easterseals Transportation Group and what we are doing to create more equitable access to services and settings that everyone should be able to enjoy, visit our website.

Jeremy Johnson-Miller is the Communications Manager for the National Aging and Disability Transportation Center (NADTC) at Easterseals, a federally recognized technical assistance center funded by the Federal Transit Administration, focused on ADA accessibility for older adults and people with disabilities across the country. Jeremy coordinates the release of publications and reports from NADTC, also conducting training and group facilitation for transportation agencies and state DOTs across the country. Prior to joining Easterseals, Jeremy served as Mobility Programs Administrator at Iowa DOT Public Transit Bureau for 6.5 years, providing guidance and oversight of state and federally funded grant programs, also overseeing outreach and collaboration with communities and other state departments within Iowa. Jeremy holds a bachelors in Geography from the University of Iowa and is a Certified Public Manager from Drake University in Des Moines, Iowa.
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Level Up: Disability Employment in Gaming
Tuesday, April 2, 2024, 11:11 AM

Level Up: Disability Employment in Gaming

Tuesday, April 2, 2024, 11:11 AM

By Grant Stoner As a medium, video games allow us to remain connected. Whether it’s long-distance re…

By Grant Stoner

As a medium, video games allow us to remain connected. Whether it’s long-distance relationships or friendships, or the inability to physically or cognitively access a space, gaming is crucial in creating lifelong memories. And for some individuals, it’s one of the few mediums that anyone can explore, regardless of disability. According to Xbox, approximately 429 million players globally have some form of a disability.

The gaming industry is multifaceted through the opportunities it provides to both consumers and employees. From varying roles in studios, to content creation and media, there are numerous jobs to satisfy an array of interests. For disabled people especially, the capability to work fully remote, as well as create your own position in a massive industry is crucial for accessibility and independence. For this story, we spoke with a disabled streamer, member of the press, and consultant to explore why they work in gaming, the ways in which it could be more accessible, and their hopes for the future of employment for disabled individuals in this industry.

Mollie Evans

Mollie “LittleMoTac” Evans is a content creator and DE&I consultant who regularly streams on platforms like Twitch, YouTube, and TikTok. For Evans, her career in streaming was a direct result of inaccessibility in her previous job. Yet, despite the independence, being a content creator can still be demanding, especially for a disabled individual.

“Streaming is both accessible and not accessible,” Evans said. “The streaming part itself is accessible, in that it allows me to make my own schedule, and I can work it around my disabilities. However, the inaccessible part is the demand for content creators to constantly be networking, attending events and continuously pushing out content. I cannot attend events, and if I can they’re incredible stressful, so all my work networking has basically been done online, which thankfully is becoming a more acceptable side of content creation.”

Aside from the challenges of growing and maintaining connections and an audience, disabled streamers and content creators need to purchase most, if not all their own equipment. Sponsorships and viewers are all dependent on what content you create, how often you go live, and the quality of broadcasts. It’s a career that can be physically, cognitively, and financially demanding. However, it provides unique methods to directly promote views, knowledge, and expertise on topics that each creator intimately understands. And for Evans, that means using streams and videos to educate about the disabled experience.

“Disability, for me, is such an integral part of who I am and my life. I don’t have a choice to hide how it affects me, and so I have been very open about it from very early on in my time streaming and creating content,” she said. “I have always been very open about my symptoms, and how they affect me on the day-to-day, especially as invisible disabilities are still so often disregarded. I feel like it was important for me to be open about it. A lot of my content now focuses on accessibility and disability in gaming, but also about inclusion of marginalized people in gaming in general.”

While streaming can always be more inclusive, especially through sponsored events pertaining to disabled communities, Evans can have a career in games because of her platform.

Antonio Martínez

Editor In Chief and Mobility Editor for Game Accessibility Nexus, Antonio Martínez creates and edits articles pertaining to accessibility and the disabled experience in games. Martínez’ stories help to inform disabled individuals about potential barriers they may experience with games. With a passion for writing, he is hopeful that his stories can educate, and occasionally protect disabled consumers. However, as a disabled member of the press, he regularly encounters his own inaccessible hurdles while trying to produce work for the public.

“I must say over the years it has become less and less accessible for me,” Martínez said. “SMA (Spinal Muscular Atrophy) causes strength, endurance and mobility loss as time passes. I can’t use a physical keyboard as I used to, so it’s been years now with an on-screen keyboard. Voice dictation doesn’t work well for me due to my voice being inconsistent, not to mention my accent. In English it can go from totally wrong to acceptable. In Spanish, my native language, it works better.”

Beyond the lack of physical stamina and accessible technology, being a journalist dedicated exclusively to accessibility can be difficult. Despite the increased innovations across most AAA and Indie studios, establishing connections with PR companies and their respective studios is a constant struggle to prove the importance of highlighting accessible information. And when review codes are distributed, Martínez needs to consistently play, write, or edit to provide accurate information. Sometimes, as he notes, this can include stories with “over 4000+ words and that’s draining.” Yet, he is proud of the work he accomplishes, and is hopeful that more stories and more exposure will lead to opportunities for disabled journalists.

“I hope we get the chance to write in more mainstream media, about games, accessibility, disability, or any subject,” he said. “Disability is always part of our lives, and nobody is better than us to speak about things that we experience daily, but we are more than that. Limiting us to certain subjects is not fair. We have the same interests and hobbies as anyone else, disabled or not. Sports, history, science, entertainment, social issues, you name it.”

As accessibility knowledge and implementation continues to grow in gaming, journalists are desperately needed to cover these important topics. Martínez and others are opening career opportunities with every story.

Paul Lane

Accessibility consultant, Paul Lane has credits in some of the most accessible AAA titles. From The Last of Us, to Marvel’s Spider-Man 2, Lane’s career in consulting is only possible because of his lived experience as a physically disabled individual.

“What drew me to consulting was the opportunity to leverage my unique perspective as both an able-bodied and disabled gamer to improve the gaming experience for others,” Lane said. “I can share the frustrations I’ve faced as a disabled gamer and use that knowledge to advocate for better accessibility features. Companies and studios that I work with go the extra mile to make sure I have everything I need to succeed.”

As his career evolved, Lane was sought by studios to provide his unique expertise to accessibility. And as accessibility grew in popularity, particularly in gaming, other tech companies took notice, offering Lane roles to help make their products and businesses accessible. As the world becomes increasingly aware of accessibility and disabled individuals, Lane is hopeful more accessible consulting opportunities will arise for disabled people, especially in gaming.

“There is a growing awareness of disability rights and inclusion, which is creating a greater demand for accessibility consulting services,” he said. “I hope to see a future where disabled consultants have equal opportunities to succeed in the consulting industry. This includes having access to training, mentorship, and leadership opportunities.”

Streaming, media, and consultancy are only some of the opportunities that disabled individuals can explore for work in gaming. However, even with the increased awareness, accessibility and disabled inclusion still requires constant learning and understanding. While it’s great to see more disabled people enter the workforce, better resources, tools, and assistants are required before we can truly claim gaming is an inclusive industry.

Grant Stoner is a disabled journalist covering accessibility and the disabled perspective in the gaming industry. When not writing, he is usually screaming about Pokémon or his cat, Goomba, on social media.

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Beyond Content Notices: Mental Health Accessibility in Gaming
Wednesday, March 13, 2024, 4:54 PM

Beyond Content Notices: Mental Health Accessibility in Gaming

Wednesday, March 13, 2024, 4:54 PM

Editor’s Note: This blog contains mentions of suicide, self-harm, and panic attacks. By Coty C…

Editor’s Note: This blog contains mentions of suicide, self-harm, and panic attacks.

By Coty Craven

Imagine this scenario:

You’re enduring a depressive episode. You’re isolated, you’re no good at asking for help, or maybe mental health care is inaccessible to you. The current state of the world is not helping things and suicidal ideation remains stuck at the back of your mind because nothing is showing any signs of getting better. You’re longing for a break from what you’re feeling and video games have always provided you with that, so you fire up the latest game you’ve just downloaded.

Instead of that desperately needed break, the first thing you’re met with is a cutscene in which a young woman is willing herself to commit suicide. Now the one place you can often find an escape is mirroring your reality and you had no idea that would happen when you bought the game. What goes through your mind?

Games are a powerful medium. Some of the most important relationships in my life began because of a shared love of them. I’ve used games as a tool to navigate grief, loneliness, and depression. I’ve cried during the death of a character I’ve spent dozens of hours with in a fictional world and agonized over who to pursue romantic relationships with in games that feature them. Games are a unique medium in that they put us in control of the characters and events in the way books, TV, and movies cannot. In games, we walk into the burning buildings, carry out acts of war, and face the deaths of loved ones. Given games’ unique nature, we can be impacted by them in unique ways.

The necessity – and the dire state – of mental health accessibility in games was recently brought into sharp focus for me a few months ago during what I’d intended to be a relaxing gaming session after my weekly therapy appointment. Undergoing EMDR (eye movement desensitization and reprocessing) therapy for a fire-related trauma, my session had been difficult with time spent recalling and focusing on the memory of the trauma I was processing. My therapist prescribed self-care and being gentle with myself as my homework that day and asked me to avoid triggers related to the work we were doing. My method of choice for self-care? Time spent continuing my fifth play through of one of my favorite games, The Witcher 3.

Screenshot from The Witcher 3.

Still on edge from EMDR, I launched the game and snuggled up on the couch with my dogs. Continuing the main quest line, I led Geralt to Crow’s Perch, the Bloody Baron’s hold in Velen. Geralt ran toward the castle where alarm bells were ringing and as he approached, the unmistakable roar of fire filled the air. I’ve played this game five times and knew precisely what to do. Run to the burning barn, climb the ladder, free the horses, unblock the barn door, and save the trapped man. But this time it was different. This time, the roar of flames was fresh in my mind, the urgency of escape and safety my only focus. My chest became tight and my vision narrowed. I could feel my heartbeat in my teeth and the metallic taste of adrenaline filled my mouth. Before I knew it, I, too, was surrounded by flames and choking on smoke.

From the safety of my home, this quest in a game I’ve played countless times brought on a panic attack. This usually mundane quest didn’t even cross my mind as being potentially triggering when I sat down to enjoy the game. I later asked my therapist why this time, what had changed since the first five playthroughs? She explained that my brain was essentially more primed for panic from things related to the trauma we were processing together because the event and all the emotions related to it were fresh and top of mind because we were revisiting them through EMDR. She also explained that it wouldn’t always be like that, which was a relief because I just wanted to enjoy time with Geralt.

According to the National Alliance on Mental Illness (NAMI) one in five adults and one in six youth in the US experience mental illness every year. Among them are PTSD, depression, and anxiety. With 65% of the US population playing video games (ESA, 2023) it’s safe to say that far more than just me stands to have their mental health impacted by video game content.

The games industry has made massive strides in accessibility in recent years with the launches of games like Forza Motorsport and Stories of Blossom and updates to games like Marvel’s Spider-Man 2 which brought audio description and full closed captions among many other improvements. Though we still have a ways to go, games can be enjoyed by more people than ever before. There’s one area in which we’re still regularly failing in accessibility though – mental health. While we are seeing many games addressing things like thalassophobia (the fear of deep water) and arachnophobia, there’s still little being done to aid gamers with things like PTSD, anxiety, and depression beyond the general “this game contains depictions of…” warning many games display upon launching them. If your mental health could be impacted or even harmed by content such as structure fires, racist violence, or the death of a child, there’s not really a standard in place to support you in making your gaming choices. So what’s a person to do if like me, they’ve been given instructions to avoid triggering topics and have no way to tell what they may experience in a game?

Chicory: A Colorful Tale allows gamers to skip certain content.

In the Xbox Accessibility Guidelines, Microsoft offers guidance on how to support players wanting to protect their mental health. They advise providing players with information on game and story content and tools to skip or avoid potentially triggering content. Recently, we’ve seen more games trying to address mental health. Horizon Forbidden West patched in a thalassophobia mode which lessens the deep water effect for underwater areas. Lethal Company has an arachnophobia mode which turns all in-game spiders into the word “Spider.” The Dead Space Remake has a robust content warning system that allows players to both be warned when triggering content is coming up and skip it entirely, similar to that of Chicory: A Colorful Tale.

So many of us play games both to connect and escape and nothing can wrench someone out of that joyful place quite like being unknowingly confronted with something traumatic or triggering. As conversations on mental health become more and more commonplace and accepted, I hope that games can catch up to meet the needs of those of us who love the medium and want to protect our peace by building better and more thoughtful content warning systems, so we can enjoy our hobby while also caring for ourselves.

Coty Craven is a game accessibility and inclusion expert and the founder of game accessibility sites Can I Play That and the Game Content Triggers Database. He lives in Michigan with his dogs and works as a project manager at Descriptive Video Works. He loves exploring fictional worlds in games and exploring the outside world on hikes.

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Love is Advocating for Accessible Public Transit
Wednesday, February 28, 2024, 1:50 PM

Love is Advocating for Accessible Public Transit

Wednesday, February 28, 2024, 1:50 PM

By Mike Ervin Every once in a while, I have what I call a “green-bus nightmare”: I’m out…

By Mike Ervin

Every once in a while, I have what I call a “green-bus nightmare”: I’m out and about and all of a sudden, a public transit bus goes by and it’s painted green and there are three big steps inside the front door — so it’s inaccessible as hell for someone who uses a wheelchair, like me.

The public transit buses in Chicago are much different today. They’re painted white, red and blue and inside the front door is a ramp that flips out onto the curb when the driver flips a switch so a wheelchair user can roll right in.

So in my nightmare, I’m mad as a hornet when I see the green bus go by. I say to myself, “What the hell is this? I thought those inaccessible buses were long gone!”

And then I wake up and realize it was just a bad dream.

But that’s how things were in Chicago prior to 1990, when the Americans with Disabilities Act was signed into law. The ADA requires that all public transit buses put into service must be wheelchair accessible. But without any federal mandate like that, there wasn’t a single accessible bus in the street fleet of the Chicago Transit Authority (CTA). You can imagine how frustrating that was for anyone who didn’t have the physical ability to board CTA buses. It was as if the CTA system didn’t even exist. To give people today some context on that situation, I ask people to imagine that the entire CTA system is suddenly and indefinitely shut down! How would that impact their lives? How would they get around? How isolated, abandoned and angry would they feel?

This is why I became an activist. I graduated from college in 1978 and I was living with my mother and sister in the house in which I was raised. The house was on a main street and a green CTA bus passed by several times a day. Come about 1983 or so, I began hearing word-of-mouth tales from other disabled folks about a group of disabled activists in Denver, Colorado who called themselves American Disabled for Accessible Public Transportation (ADAPT). There were public transit buses with wheelchair lifts in operation in Denver mostly because ADAPT organized aggressive protests where people in wheelchairs did things like surround inaccessible buses that were on the street waiting at intersections. The protesters wouldn’t move for several hours so the bus couldn’t move either. And sometimes ADAPTers even got arrested for protesting like that.

Right around that same time, a man from Chicago named Kent Jones, who used a wheelchair, went to Denver to attend an ADAPT organizing training for people from around the country. When he returned, he called a meeting for the purpose of organizing a local chapter of ADAPT.

I attended the meeting because I was mad. Hearing about the exploits of Denver ADAPT forever changed my perspective on those green buses that passed my house daily. I now saw them as an essential public facility as much as city hall or the library. Thus, I was mad at myself that I wasn’t as mad a lot sooner as I was now about what the inaccessibility of that public facility meant. It meant that if I wanted to go somewhere, I either had to spend a lot of money purchasing a vehicle and adapting it to be accessible, spend a lot of money hiring an accessible vehicle such as a med-i-car, to take me there or just forget about it and not go. But if my neighbors who weren’t wheelchair users wanted to go somewhere, all they had to do was wait at the bus stop. And that meant that those who designed the CTA thought that disabled people like me never could or should use it.

The ADAPT principle of direct-action protest says that you take your demands directly to the person or entity that has the power to meet your demands. In our case, that was the seven-member CTA board of directors. Four are appointed by the mayor of Chicago and three are appointed by the governor of Illinois.

So for our first action, we attended one of their monthly public board meetings where all of their decisions are made. We presented our demands and the first one was that every bus that they ordered from now on must be equipped with a wheelchair lift. We disrupted the meeting with chanting and noisemakers to demonstrate our resolve.

ADAPT protesters during the lead up to the passage of the ADA.

But the CTA board voted unanimously not to include lifts on any new buses. So we continued disrupting their meetings, blocking traffic in our wheelchairs so buses couldn’t get through and staging similarly aggressive but nonviolent protests. Sometimes we got arrested. We also pursued a discrimination lawsuit against the CTA with the help of pro-bono lawyers.

The lawsuit eventually went to trial and in January of 1988, the judge who presided over the trial ruled that CTA illegally discriminated against the disabled under state law by not having any mainline accessibility. Shortly after that, the CTA board, which now had a member who was a wheelchair user who was an ardent ADAPT supporter and had been appointed by Mayor Hafold Washington, voted 6-1 to equip future buses with wheelchair lifts.

And shortly after that, the ADA was signed.

When I reflect on all this, I feel our campaign to make public transit accessible was motivated by love — love for ourselves as people with disabilities and love for the disabled community. It’s true that we simply wanted more freedom to travel independently. But there was much more to it than that. It was so important to us because we were insulted that we were being denied a basic freedom just because we were disabled. We loved and respected ourselves and each other too much to accept the notion that we deserved and should settle for less because of our disabilities. We deserved to be accommodated and included and we wouldn’t take no for an answer.

We also hoped that bringing about this change would pay dividends far into the future, not just by making it easier for further generators of disabled people to get from one place to another but by lessening the debilitating sting of disability stigma, which is so often used to rationalize exclusion. The more we are a natural element of the daily routines of people whose lives aren’t affected by disability, the less they will be inclined to believe that we don’t deserve to be among them. And hopefully that has made and will make it easier for others to break down the many other walls of disability segregation.

A famous quote by Che Guevara is, “the true revolutionary is guided by a great feeling of love. It is impossible to think of a genuine revolutionary lacking this quality.”

Regardless of one’s opinion of Che Guevara, he was sure right about that.

Mike Ervin is a writer and disability-rights activist living in Chicago. He is a columnist for the Progressive magazine and writes the blog Smart Ass Cripple.

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Beyond Compliance: Fostering Accessibility, Inclusion, and Cultural Humility
Monday, February 19, 2024, 1:41 PM

Beyond Compliance: Fostering Accessibility, Inclusion, and Cultural Humility

Monday, February 19, 2024, 1:41 PM

By Andrea Jennings Community Love: Cultural Humility and Accessible Solutions In the tapestry of hu…

By Andrea Jennings

Community Love: Cultural Humility and Accessible Solutions

In the tapestry of human experience, accessibility is intertwined with love, shaping the fabric of a compassionate and inclusive society. One example is disability justice advocate Mia Mingus, who coined the term “access intimacy,” which describes the feeling when someone who is not necessarily from the disabled community understands your access needs.

As February unfolds with the celebration of Valentine’s Day, it’s an opportune time to reflect on how we all share love, express love, and foster accessibility, extending the significance beyond mere observance to embody a lifestyle of inclusion, cultural humility, and genuine care.

From childhood, I was fortunate to learn the true essence of love from my mother, particularly during Valentine’s Day. It wasn’t just about exchanging chocolates and flowers and embodying Agape love—selfless, unconditional, and inclusive. My mother’s teachings transcended romantic notions, emphasizing the importance of spreading love beyond our immediate circles. Together, we embarked on a tradition of making Valentine’s cards for friends and everyone in my class, ensuring no one felt left out. This act of kindness extended to our family members, neighbors, and anyone who crossed our path. Through these gestures, my mother instilled in me the belief that love knows no bounds and should be shared generously with all.

Reflecting on my upbringing, I realize the parallels between love, accessibility, and cultural humility. Accessibility is not merely a privilege or favor but a fundamental aspect of humanity. Just as we wouldn’t frame love as a favor granted to select individuals, accessibility should not be viewed as something we should be grateful for. It is a basic human need and a right for all individuals.

Fostering accessibility is a manifestation of love in action. It removes physical, social, and systemic barriers that hinder full societal participation. Whether implementing wheelchair ramps, providing signage, or offering assistive technologies, accessibility ensures everyone has equity and equal opportunities to engage, participate, and succeed.

Cultural humility serves as a crucial aspect of fostering accessibility and inclusion. It empowers us to recognize our own biases and privileges while actively seeking to respect the experiences of others. By approaching interactions with humility, openness, and a willingness to learn, we create spaces where diversity is celebrated and everyone feels valued and included.

Romantic Love: Challenging and Removing Microaggressions and Assumptions

In addition to advocating for ourselves, Disabled individuals often face micro aggressive comments and assumptions when it comes to romantic relationships. Society’s narrow perceptions of disability can lead to intrusive questions and misguided beliefs about the nature of our relationships.

Microaggressions can manifest in various forms, such as asking personal questions that would not be directed at non-disabled individuals or making assumptions about the dynamics of our relationships based on our disabilities. For example, comments like “you’re so lucky to have a partner despite your disability” overlook the possibility that both partners contribute equally to the relationship or that the non-disabled partner may also benefit from the relationship.

Flower photography by Andrea

These microaggressions not only perpetuate harmful stereotypes but also undermine the autonomy and agency of disabled individuals in romantic relationships. Instead of being seen as capable of experiencing love and intimacy on their own terms, disabled individuals are often objectified or pitied, reinforcing the notion of their otherness.

Challenging these microaggressions in our community and the media requires a commitment to dismantling ableism and fostering genuine inclusivity in all aspects of society. Changing those perceptions is one way we shift paradigms.

Self-Love: Being Kind To Ourselves While Advocating

Advocating for ourselves in a world that often overlooks or dismisses our needs can be exhausting. Not only do we face external barriers to accessibility, but we also frequently find ourselves in the position of having to justify our disabilities and access requirements. This constant need to explain and defend our existence can affect our mental and emotional well-being.

While advocating for our rights and pushing against the status quo, it’s crucial to remember the importance of self-love. This means being kind and compassionate to ourselves. Self-love entails acknowledging our worthiness and deservingness of respect and accommodation without needing to justify or apologize for our disabilities.

While in college, I asked for a specific accommodation, and that instructor replied, “oh yes, I know you want this to be easy-peasy.” Not only was this comment unnecessary, but it was condescending in nature and an example of microaggression that I often encountered. After these constant assumptions, it is important to remind ourselves of our worth.

Embracing self-love while advocating for ourselves is an act of self-preservation and a radical resistance against ableism and discrimination. It allows us to reclaim our narratives and assert our agency in spaces that often seek to marginalize us and not recognize our autonomy. Advocating for accessibility and recognizing our independence becomes pivotal in this context.

Self-love also involves setting boundaries and prioritizing our well-being. It means recognizing when to rest and recharge and not feeling guilty for prioritizing self-care.

Integrating the understanding of the spoon theory offers valuable insight into managing energy levels for those with chronic illnesses or disabilities, reinforcing the importance of self-care and advocating for our well-being. Within this framework, acknowledging the nature of energy reserves and learning to pace activities enables individuals to prioritize their well-being and cultivate a sustainable approach to self-care.

Moreover, self-love empowers us to challenge internalized ableism and embrace our disabilities as integral parts of our identities. Instead of viewing our disabilities as something we need to change, we can celebrate them as unique aspects of who we are and understand it is the barriers that need to change. This allows us to embrace our authenticity and cultivate a sense of empowerment and pride in ourselves.

In conclusion, prioritizing accessibility and cultivating love in various spheres — community love, romantic love, and self-love — is vital for fostering inclusivity and empowerment. By collectively prioritizing accessibility, challenging microaggressions, and promoting nurturing self-compassion, we construct a world where every individual’s worth and uniqueness are celebrated.

Andrea Jennings, M.Mus., is a Disability & Accessibility Strategist, Actress, and filmmaker passionate about music, law, and entertainment. Her journey led to creating Shifting Creative Paradigms – Leveling The Playing Field® Multi-Media Production Co., advocating for social justice through Disability culture, film, music, and art. Her work has graced prestigious platforms like Park Avenue Armory, The Metropolitan Museum of Art, and Rutgers University. Her work is also recognized in Forbes, Billboard Magazine, The Atlantic Magazine, The Hollywood Reporter, and The New York Times.

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