January 2020, Vol. 6, No. 1
RAISE The Standard Newsletter
Raising the Standard for Young Adults with Disabilities
Technical Assistance and Resources for RSA-funded
Parent Training and Information Centers
“The first wealth is health”

-   Ralph Waldo Emerson, American essayist, lecturer and poet
“America’s health care system is neither healthy, caring, nor a system.”

-   Walter Cronkite, American journalist and
long-time anchor of CBS Evening News
Much can be said about health care in America. It is confusing, fragmented, expensive, and vital.

It is the most complex health care system in the world. In this edition of RAISE The Standard, we explore issues related to health care and health care-related decision making for youth of transition age.

Most of these young people have either private insurance—through a job, through parents, or purchased through the Affordable Care Marketplace—or public insurance, through Medicaid. Some have a combination of coverages.
The Affordable Care Act

Prior to 2014, people with disabilities had difficulty purchasing health care insurance in the individual commercial market because insurers would not provide coverage for people with pre-existing conditions, or because policies could be prohibitively expensive.
The Affordable Care Act (ACA) changed that. Now, everyone has the right to buy health insurance under what is known as the “guaranteed issue” provisions of the ACA. These provisions require three things:

  1. Insurers cannot deny coverage due to disability or pre-existing conditions.
  2. No one can lose their insurance or be denied the right to renew their insurance simply because they become sick or develop a disability.
  3. Insurance companies cannot set premiums based on a person’s health conditions, so people with disabilities cannot be charged more simply because of their disability.

Medicaid Explained

Medicaid is a federally-funded, state-managed health insurance system that provides a broad range of medical and long-term care services to meet the needs of people with disabilities, people with low income, children, and other vulnerable groups. The services it covers include primary and preventative care, medical treatment for illnesses and chronic conditions, and nursing home care.

  • Medicaid provides health insurance coverage to more people than any other single program in the United States.
  • Roughly 74 million people are covered by Medicaid.
  • One in five Americans is covered by Medicaid.
  • Roughly half of those covered under Medicaid are children.
  • Roughly 10 million Americans qualify for Medicaid based on a disability.

Medicaid is more than health insurance: it pays for long-term care and community based supports, helps people with disabilities get and keep jobs, and helps fund services to eligible students in schools.

While it is a national program, Medicaid coverage, eligibility, and services vary greatly from state to state. This 11-minute video from Vox outlines the history of Medicaid and its role in American healthcare, and describes how the variations in coverage from state to state can literally be a matter of life and death.

Understanding Private Insurance

Some people are covered with private insurance—common carriers include United Health Care Group, Wellpoint, Kaiser Foundation, Humana, Cigna, and Blue Cross, to name a few. These providers offer insurance coverage both through employers, and on the Affordable Care Marketplace. These plans have deductibles, copays, in and out of network doctors, and other features that many users find confusing.
What do these terms mean, and how does it work?

Illustration of a magnifying glass

Your health care information is private. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) established that medical information for anyone over the age of 18 is private, even if they are still covered by their parent’s insurance. The law does not consider whether the person has a disability or the capacity to make informed decisions.

Medical Information and Medical Decision-Making: HIPAA Release and POA (*)

Making health care decisions can be a matter of life and death. While most young adults with disabilities (at age 18, a student is considered by the law to be an adult) are legally competent to handle their own day-to-day affairs, a person with a disability may wish to have assistance from someone they have chosen and whom they trust - a parent, a sibling, a spouse, or a close friend – in handling certain complex medical matters.

Currently, all but seven states (Massachusetts, Minnesota, Missouri, Nebraska, New Hampshire, Rhode Island, and Vermont) have a surrogate consent law that allows family members or friends to make medical decisions in an emergency or serious health situation when a person with special needs cannot make medical decisions for himself and if no relevant power of attorney or similar is in effect. Most of these laws presume that the family would follow the individual's wishes.

Most advocates and attorneys recommend that all people – but especially individuals with disabilities and their parents/guardians - engage in more intentional planning.

Here are three important planning tools and documents that are worth having in place:

1) A HIPAA release allows health care providers to release and share medical information with a specific individual of the person’s choice—and even an app. Without a signed HIPAA form, doctors may refuse to discuss the adult child’s condition with a parent or caregiver. A signed HIPAA authorization doesn’t need to be notarized, and those who sign these forms can prevent some information (for example, sex, drugs, or mental health) from being disclosed.

2) Health Care Proxy is a document no one likes to think about, but it is important. A Health Care Proxy, also called a health care agent or Power of Attorney for Health Care, is the person you choose to make health care decisions for you if you’re too sick or injured to make them for yourself. Your proxy can talk with your doctors, consult your medical records, and make decisions about tests, procedures, and other treatment if you are not able to do so. Everyone age 18 or older should complete a health care proxy form — even if they’re perfectly healthy.

3) A Medical Power of Attorney (POA) allows a young adult to appoint someone to make medical decisions on their behalf. Different states have different laws, different forms, and different rules on whether these forms need to be notarized or signed by witnesses. In some states, HIPAA authorization is a part of the standard medical power of attorney form. Some individuals may want to take an additional step by appointing a Durable Power of Attorney, which allows another person to take care of other business, such as filing taxes, paying bills, or accessing bank accounts, on their behalf.

Consent and Signature

Q: What constitutes “consent” for young adults with intellectual and developmental disabilities?”
A: The United Nations Convention on the Rights of Persons with Disabilities is the first international treaty to recognize that all people with intellectual and cognitive disabilities have a human right to legal capacity. Article 12 calls for supported decision-making to replace substituted decision-making such as power of attorney or guardianship. What is the difference? Substituted decision-making transfers responsibility to make decisions to a third party. Supported decision-making allows people with intellectual and cognitive disabilities to name trusted supporters to assist them with making decisions and to assist with communication. Nowhere is this support more important than in making informed decisions about one’s own health and end-of-life care.

This in-depth article from the University of Kansas digs deep into the practical and legal issues on health care decision making.

Q: What constitutes a “signature’?
A: According to UpCounsel.com, signatures are the most common method of indicating that you have read over and agreed to the terms, even if a person’s signature is so stylized and unique that’s illegible – even digital. Regardless of the form, the importance of the signature entails proof that an offer has been accepted and considered.

But what form is acceptable? All one would need is a mark that represents who that person is. It can be in the following forms:

  1. Squiggles
  2. Picture
  3. “X”

As long as the signature represents who that person is and their informed intent, any of the marks are considered valid and legally binding. Signatures are usually recorded in pen, but this is not always the case.

(*) Please note, this article and these links do not constitute legal advice. Those interested in HIPAA release or POA should get advice from local advocates or legal professionals. In order to develop, consent to, and sign these documents, the individual must have the capacity to make the decision to share information and/or appoint a surrogate.

What is Medicaid Buy-In?

Health insurance coverage can have an important relationship to employment for people with disabilities. People with disabilities on Medicaid may be concerned that they will lose their Medicaid coverage if they enter or return to the workforce. Furthermore, commercial or employer-based health insurance might not provide ample coverage for services and supports, such as personal assistance services, that enable people with disabilities to work and live independently. The Medicaid Buy-In program allows persons with disabilities to purchase Medicaid coverage that helps enable them to work.

The Medicaid Buy-In program for working people with disabilities is an option authorized under the federal Ticket to Work and Work Incentives Improvement Act.

The Medicaid Buy-In program offers health care coverage to people with disabilities who are working, and whose earnings and resources might otherwise make them ineligible for Medicaid. The Medicaid Buy-In program is an optional Medicaid program that states may choose to provide. States have latitude in the design of their Medicaid Buy-In program, and not all states offer the program. Eligibility determination, which varies by state, considers factors such as employment, disability, income, and resources.

Your Privacy May Be at Risk

While it might be tempting to turn to “tech” to communicate and share information, users need to be cautious. In 2017, there were nearly half a million health and wellness apps on the market. Consumer Reports warns that patient privacy may be at risk.

Researchers found that companies can gain access to personal information that is used to target ads, or worse. Some health apps provide enough information to make users completely identifiable, allowing an insurance company or another entity to buy packages of data that reveal your medical condition.

“The information that consumers reveal to health apps can be especially personal and can also find their way into users’ health scores, which are used in insurance underwriting, and in other ways a consumer would not expect.”
-   Dena Mendelsohn, senior policy
counsel for Consumer Reports

Tools that Work icon wioth hammer and icon with screwdriver and wrench on yellow background

Over the course of 20 years, the Ticket program has served over one million people with significant mental and physical disabilities through a modern, nationwide employment services and support system comprised of more than 700 providers drawn from both the public and private sectors.
Ticket to Work 20th anniversary image
Every year, thousands of people with disabilities find jobs and leave Social Security disability benefits behind to support themselves through employment. In many cases, they will earn more than they would have from benefit payments.

Illustration of a push pin with talking face on circular background

Sometimes, insurance companies will deny coverage for durable medical equipment or other services. Common reasons for a denial include:

  1. The requested equipment is considered “non-covered” under your insurance plan.
  2. Equipment is covered, but only under certain circumstances, for example, only when it is ordered by an in-network physician.
  3. The insurance plan considers the device or treatment to be experimental or investigational.
  4. Your insurance plan finds the equipment not medically necessary, based on diagnosis or medical documentation submitted.
  5. The insurance plan misunderstands the request or circumstances.
Need to appeal a private insurance decision? Here's a video, developed by Cochlear America, outlining the process to appeal denial of coverage for durable medical equipment.

Need to appeal a Medicaid decision? This video details your rights to appeal.

How to Pick Someone to Help You Make Health Care Decisions and/or, to Make them on Your Behalf

Imagine that you suddenly got too sick to make your own decisions about your medical care. Who would you want to make such decisions on your behalf?

You have the right to choose a health care proxy, or person you trust to make medical decisions for you in case you are unable to speak for yourself. Once you select your proxy, you can make your decision known by filling out a simple form known as a Health Care Proxy.

  1. Pick a person you trust to make decisions in line with your wishes. Your health care proxy can be a family member, your spouse, or a friend. This person will be able to talk to your doctors, look at your medical records, and make decisions about different tests or procedures if you are unable to do so yourself. Be sure to choose someone you think can best honor your wishes and preferences for your care.
  2. Make sure the person you choose is comfortable with the role. Once you choose someone, take the time to explain that in this role, the person will be responsible for making medical decisions on your behalf if you are unable to make them yourself. Be sure to answer any questions and communicate any goals or wishes you may have for your care.
  3. You can change your health care proxy at any time. It is okay to change your mind about who you choose to be your proxy for any reason. Just be sure to fill out a new form and inform your doctor and family members about the change. Your doctor can answer any other questions you may have about choosing a health care proxy and help you fill out the form.

The Institutes for Healthcare Improvement and the Conversation Project have developed a “Conversation Starter Kit to help structure the discussion and decision making.

Simple illustration of spotlight in a circlular background
REACH for Transition (Resources for Employment, Access, Community Living, and Hope) acts as a Statewide Parent Advocacy Network (SPAN) collaboration between 9 parent centers (in the states of CT, ME, NH, NJ, NYC, PA, VT) serving parents, youth/young adults with disabilities, and professionals, and their Vocational Rehabilitation, Center for Independent Living, and other adult system partners represented on the project’s 22 member Governing Board. The purpose is to provide innovative and responsive services that are designed with and involve diverse youth/young adults with disabilities and their families, highlight the region’s strengths and collaborative spirit, and evolve as needs and contexts change, through a regional Community of Practice that enhances participating parent center capacity, reach, and partnerships around transition and adult service systems.

REACH is one of 7 RSA PTIs nationwide that provides various training and programming to youth/young adults with disabilities and their families, professionals, and other PTIs on the issues surrounding Youth Transition, the period of time between adolescence and adulthood. They are funded by the Rehabilitation Service Administration (RSA) under the Office of Special Education and Rehabilitative Services (OSERS), which is part of the US Department of Education.

Here are some of the resources from REACH for Transition:

Alex and her child (in a sling) smiling at the camera
Parenting Disabled: An Exercise in Confidence and Creativity

“The parenting world is not used to people like me, but do you know who is used to people like me? My kids. My daughter, Arwen, approached her dad with a very serious query awhile back: “Mama have a wheelchair. Why you not have a wheelchair like Mama, Daddy?”

-   Alex Wegman, on parenting with a disability

Alex Wegman is a mother of two, writer, private tech consultant, frequent traveler, outdoorswoman, and full-time wheelchair user. She writes about her experiences as a disabled person and parent, always with the goal of helping to connect the disability community and increasing its visibility in mainstream culture.

Conferences and Webinars
Mark Your Calendar

January 15, 2020, 2:00 PM EST
An Introduction to the New Vocational Rehabilitation Toolkit for Parent Centers
A RAISE Center Webinar.

March 18, 2020, 2:00 PM EST
Making Youth Engagement Possible: Making Youth Engagement Easier For Parent Centers
A RAISE Center Webinar.

April 15, 2020, 2:00 PM EST
College Transition for Students with Disabilities: Information for Service
A RAISE Center Webinar. Presented by Anne Tulkin.
Registration information available soon at: https://www.raisecenter.org/

June 16-18, 2020
National APSE Conference, Denver, CO.

July 20-24, 2020
Association on Higher Education and Disability (AHEAD) Conference, Palm Desert, CA.

October 15-16, 2020
The Spirit of Resilience
National Caregivers Conference, Philadelphia, PA.
Collaboration • Empowerment • Capacity-building

RAISE The Standard enewsletter identifies and shares resources that the Rehabilitation Services Administration Parent Training and Information Centers (RSA-PTI) can use and share with families.
Executive Editor:
Peg Kinsell
Visit our Website:
RAISE, the National Resources for Access, Independence, Self-Advocacy and Employment is a user-centered technical assistance center that understands the needs and assets of the RSA-PTIs, coordinates efforts with the Technical Assistance provided by PTI centers and involves RSA-PTIs as key advisors and partners in all product and service development and delivery.
US Department of Education official seal
RAISE is funded by the US Department of Education to provide technical assistance to, and coordination of, the 7 PTI centers (RSA-PTIs). It represents collaboration between the nation's two Parent Technical Assistance Centers (PTACs) and the seven Regional PTIs.