Tag: self-advocates

 I Have to Sign What? Healthcare in Transition

Posted on by Nicol Walsh

When young people turn 18, a lot happens. For instance, in Washington State, 18 is the age when a person legally becomes an adult and must handle tasks and make decisions that used to be made for them by adults.

Adult responsibilities and decisions can feel scary and confusing for the unprepared. Becoming responsible for medical care is part of growing up, and that process is so critical that there’s a specific name for it: healthcare transition.

For example, at age 18, a young adult is responsible for signing official paperwork to authorize procedures or therapies and to pay for co-pays. They must sign documents stating who can look at their medical records, speak with their doctors, or attend an appointment with them. Those rules are part of HIPAA, which stands for the Health Insurance Portability and Accountability Act. HIPAA is a federal law that protects confidentiality, regardless of disability. In this video, young adults living with various disabilities and medical conditions share their journeys through the adult healthcare system. They talk about how they make decisions and how they ask for help. Their ability to explain their needs, make decisions, and speak up for themselves is called self-advocacy. Take a look and listen to what they have to say in their own words!

Learning these skills isn’t something that happens the minute you turn 18. It takes practice to learn how to ask questions at the doctor’s office, to remember to ask about medications, to bring your insurance card. If you are a youth or young adult, those are things you can start early. If you are a caregiver or parent, begin giving your young adult or child questions to ask the doctor when they go in for well-child checks at age 12 or 13. Start talking with them about the conditions they may have and answer any questions they have honestly. If they are aware of why their body is doing what it is doing they can better manage their needs and ask for help when they need it. Help them learn to manage medicine with medicine reminder apps and pill containers. These kinds of things not only set them up for success when they are 18 at the doctor’s office, but also helps them advocate better for what they need in school and the community.

Here are some great sites that provide comprehensive step by step guidance to this process. See what fits best for yourself as a young adult;  parents and guardians can think about what fits your family from their point of view.

  • Got Transition has great tools and videos for youth, families, and providers. Young adults and families developed it, so it is peer-based.
  • Charting the LifeCourse™ was created by families to help individuals and families of all abilities and all ages develop a vision for a good life, including their health care. 
  • The Center for Transition to Adult Health Care for Youth with Disabilities is a national health care transition resource center. The goal of the center is to empower youth and young adults with intellectual and developmental disabilities (ID/DD), ages 12-26, to direct their own transition from pediatric to adult care, with no reduction in quality of care and no gaps in services. 

Including Healthcare Needs and Goals in the Transition Plan

Healthcare transition is often left out of the transition process and left to parents and students to do themselves. Parents, students, and everyone on the IEP team should think about how health and healthcare can affect a student’s goals for college, work, and living on their own. Parents and students can ask that this be a part of the transition plan and can use the resources listed above in the planning process.

Including Health Considerations in the Transition Plan

Click to access Including-Health-Considerations-in-the-Transition-Plan.pdf

5 Tips for Success in Healthcare Transition

Insurance in Healthcare Transition

Posted on by Nicol Walsh

Healthcare transition, like all other aspects of transitioning to adult community living, employment, and services, can be difficult. However, if teenagers and families plan ahead for the healthcare changes that occur when a child becomes an adult, things can go more smoothly and successfully. Here are some resources and information to help make the transition to adult care effectively and give young adults more confidence and self-assurance.

There are two main components for individuals transitioning from pediatric (children) to adult health care:

  • New medical providers and systems, including changes in insurance
  • The young adult’s new responsibility of being in charge of their own health care

Health Insurance and Providers

Whether an individual is on Medicaid, Medicare, or private health insurance, eligibility, costs, and covered services may change.

Washington’s Medicaid option, Apple Health, has different financial requirements for adults than it does for minors. The type of Medicaid a youth has before age 18 may change depending on the source of their income or benefits when they turn 18.

If the disability is significant, a student or young person may be on classic Medicaid. When they turn 18, they must contact the managed care organization (MCO) that is their current healthcare provider (Molina, Community Healthcare, Well Point, etc.) and:

  • Confirm who their current healthcare provider is
  • Confirm their own current address

They must do this every 12 months.

If the youth is not

  • on Supplemental Security Income (SSI),
  • receiving Developmental Disability (DDA/DDCS) services,
  • or receiving state benefits for the blind such as Aging, Blind, or Disabled (ABD) Cash Assistance or State Supplementary Payment (SSP),

then they may be on Medicaid through the healthcare exchange, the Washington Health Plan Finder.

At 18, Washington youth are required to apply for or renew Apple Health by going to the Health Plan Finder website.  Even if an individual is not eligible for fully subsidized (paid) healthcare, the Health Plan Finder can reveal some low-priced options. 

Young adults who are on their parents’ private insurance will be covered under their parents’ plan until they are 26, unless the young adult works and are covered through an employer-based plan. When they turn 26, if they are not working and are not covered by SSI/SSDI, DDA/DDCS services, or any other disability based supports, they will need to apply for their own health insurance. Again, the Health Plan Finder can help you find affordable options, including Apple Health.

For individuals under 65 who are receiving Medicare due to a disability, insurance should not change due to the transition to adulthood. It is important to know which doctors can treat an individual’s conditions and whether an insurance plan includes those doctors. To find out, call the MCO/health provider’s helpline or view their website to find out whether those doctors are included in their insurance plan. The doctor’s office will also give information on which plans they accept and which ones they don’t.

Taking on Responsibility for Health Care and Decisions

Healthcare is just one of many new responsibilities that young people take on as they become adults.  Parents can avoid overwhelming a teen with new obligations, by beginning with giving younger teens options and increasing tasks to help them adapt to this change. There are several resources for families and youth to use in this transition:

  • Family to Family has a youth-written curriculum about Transitioning to Adult Doctors to help teens start their medical transition journeys.
  • Charting the LifeCourse™ was created by families to help individuals and families of all abilities and all ages develop a vision for a good life, including their health care.
  • Got Transition is a comprehensive website about the transition to adult health care, with quizzes, FAQs, and timelines to make it easier to understand.
  • The Center for Transition to Adult Health Care for Youth with Disabilities is a national health care transition resource center. The goal of the center is to empower youth and young adults with intellectual and developmental disabilities (ID/DD) ages 12-26 to direct their own transition from pediatric to adult care with no reduction in quality of care and no gaps in service.

Beyond these resources, the most useful resource are young adults themselves. Whether you are a parent/caregiver or a transitioning individual, it’s important to recognize that lived experience provides knowledge, even in a new situation. Parents, caregivers, and young adults have knowledge of medical needs that may not be in a chart. They know about the emotional or behavioral challenges a young person has. They know the youths’ strengths, areas for growth, other important things only an individual and their family know.

Write out what you feel is most important in your health care journey over the next 5 years. What do you need to know from doctors? What do you need to know about school and work? What do you need to know about your condition? Be curious and remember what you have already done to take care of yourself. Ask your parents and caregivers about what they see as important over the next few years. Take the time to explore, then start the transition journey to adult care with an idea of what you would like.

Another group to consult are your current medical providers and specialists. They have helped many other teens transition to adult healthcare, and they are a part of developing the care plan, a critical resource for transitioning to an unfamiliar doctor or clinic when a young adult may have complex care needs. Doctors’ office staff are also used to dealing with these issues and may have some good planning advice for families. Lastly, advice from families who have already helped a child transition to adult care can know what to do and what not to do!  Parent-to-Parent can match parents up with families who have already gone through such transitions with those who seek their knowledge and experience. Informing Families has some good basic resources on its website for getting started.

5 Tips for Success in Healthcare Transition

Including Health Considerations in the Transition Plan

Parents, Students, and everyone on the IEP team should think about how health and healthcare can affect a student’s goals for college, work and living on their own. PAVE has made a fillable form that you can download when starting to think about this area in transition.

Including Health Considerations in the Transition Plan

Download the document Including Health Considerations in the Transition Plan

Disability Redetermination: What Happens to Supplemental Security Income (SSI) When a Child Turns 18?

Posted on by Nicol Walsh

A Brief Overview

  • When a child turns 18 years of age, SSA conducts a redetermination for eligibility based on the same eligibility criteria as new adult applicants.
  • A young adult who no longer meets the eligibility for blind or disabled may continue to receive SSI payments if they qualify for Section 301 status.
  • If the dependent child of a service member on active-duty orders overseas is receiving SSI, the benefits will stop when they turn 18 years of age unless and until they have established residency in the United States for thirty (30) consecutive days.

Full Article

As a continuation to our article, Supplemental Security Income (SSI) is a monthly financial benefit from the Social Security Administration (SSA) to eligible children and adults. The SSA’s definitions of blind and disabled are the same for both adults and children, although there are some differences in eligibility requirements. 

Definitions Of Blind and Disabled

SSA defines “blind” as seeing at a level of 20/200 or less in the better eye with glasses or contacts, or having a limited field of vision that can only see things at within a 20-degree angle or less in the better eye.  A person with a visual impairment that does not meet the criteria for blindness may still qualify for SSI based on the disability.

An adult or child may qualify for SSI as “disabled” if they have a physical or mental impairment that can be medically diagnosed through clinical and laboratory diagnostic techniques for anatomical, physiological, and psychological irregularities. The condition must cause marked and severe functional limitations, including emotional or learning challenges, that have lasted or are supposed to last for at least 12 months without interruption.

What Happens When a Child Turns 18?

If a child is receiving SSI benefits, SSA will review their case two (2) months prior to the child turning 18 years of age to determine if the current medical condition(s) meets the disability requirements as an adult.  SSA will use the same criteria as new adult SSI applicants to determine if the child will qualify for disability benefits upon becoming a young adult at age 18.  This process is called redetermination.

Next, SSA will interview the young adult at the local SSI field office or by phone. SSA will ask about the young adult’s income and resources, past and current employment, and their current living arrangements. If the Adult Disability Report (SSA-3368) and Authorization to Disclose Information to SSA (SSA-827) were not completed beforehand, the SSA representative will assist the young adult in completing the forms during the interview.

Then, SSA will send the case to the DDS to review all medical information and determine if the impairments meet the SSA’s adult definition of disability. The DDS will consider all current impairments, including any new impairments even if they do not meet the duration requirement, and order consultative exams if necessary.

Finally, the young adult will receive a written notice of decision from the SSA. If the decision is that the young adult meets the adult criteria, benefits will continue uninterrupted.  If the decision is that the young adult does not meet the adult criteria, the young adult is no longer eligible for SSI, and benefits will cease after a two (2)-month grace period. Benefits may continue if the young adult appeals the decision or is granted Section 301 status.

Generally, it is easier for a child to become eligible for SSI than to wait until they turn 18 because the child is not required to show inability to obtain substantial gainful activity.

An individual is considered an adult at the age of 18, even when they are not considered competent.

What Is Section 301 Status?

A young adult who has been deemed ineligible for SSI at age 18 redetermination may continue to receive benefits if they are participating in an approved special education or vocational rehabilitation program. When benefits continue under this program it is referred to as Section 301 status. Approved programs include:

  • Individualized Education Program (IEP) for a young adult aged 18 through 21
  • Employment plan through a Vocational Rehabilitation agency
  • An approved Plan to Achieve Self Support (PASS)
  • A written service plan with a school under Section 504 of the Rehabilitation Act

If the young adult’s physical or mental impairment has ceased, their SSI benefits will not be terminated or suspended if:

  • The young adult participates in an appropriate program of Vocational Rehabilitation (VR) services, employment services, or other support services.
  • They began participating in the program before the month his or her disability or blindness ceased.
  • They continue to participate in the program through the two (2)-month grace period after cessation; and
  • Completion of the program, or continuation in the program for a specified period of time, will increase the likelihood that the young adult will not return to the disability or blindness benefit, as determined by the SSA.

If benefits stop at age 18, the young adult has a right to appeal the decision through reconsideration or appeal to administrative law judge.  If the appeal is filed within 10 days of the redetermination notice, SSI payments will continue while the appeal is in process.

If The Child Was Receiving SSI as a Military Dependent Overseas

The special rule that allows dependent children of active duty servicemembers serving on permanent duty ashore to an overseas assignment does not apply after the child turns 18 years of age. Once the child turns 18, they will no longer be eligible for SSI until they have been living within the United States for thirty (30) consecutive days. The SSA requires proof of residence stateside, which may include a utility bill or rental agreement.  If the young adult was not paying room and board from the date residency began, the period during which they were not charged will be considered in-kind income and may delay a positive eligibility determination.

More On This Topic