Rebel Well: for those who are disabled

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Wed, 01/17/2024 - 13:58

This piece is part of Rebel Well: a Starter Survival Guide to a Trumped America for Teens and Emerging Adults.

Many disabled people are very concerned about threatened changes to the Affordable Care Act, Social Security, Medicare, and Medicaid, as well as state programs that subsidize aides, medical equipment, and other needs, alongside potential changes to the IDEA Act and other legislation that protects disabled students.

If you have concerns about your healthcare: The healthcare section of the guide is duplicated for you below, so you can check in with it. But disability is more than the sum of its parts, and you may be worried about the risk of being forced into a nursing home, facing discrimination at work or school, being harassed on the basis of your disability status, and other civil rights violations as a result of a disablist administration that could roll back important civil rights gains.

If you haven’t found your people yet, do it now. Disability can be very isolating in the best of circumstances and disabled youth are often kept out⁠ of the loop. Find organizations for people who share your disability. Join or start a group in your area. Take advantage of the internet! Reach out to nondisabled people around you to build a support network. Be clear and honest about your needs and make sure they understand that you may be counting on them and they shouldn’t take it lightly. Make a plan: If your aide’s hours are cut back or canceled, how will you accomplish tasks of daily living? If your parents can’t assist you, who is your fallback?

In the event of any pending Individualized Education Programs or rulings on benefits and services you need, expedite. Start following a state disability rights organization to learn about pending legal issues that may affect you.

If you haven’t officially been diagnosed or you’re seeking legal disability status to access benefits you need, think carefully. It may be to your advantage to have a formal diagnosis as you could obtain Americans with Disabilities Act (ADA) protections, which are unlikely to be repealed. However, it could also work against you if you need to buy private insurance or leave the country.

Until the great mass of the people shall be filled with the sense of responsibility for each other’s welfare, social justice⁠ can never be attained. — Helen Keller


Insurance: If you don’t know what kind of insurance you have and what it covers (or if you have it at all), ask your parents, or call the member services number on your insurance card to get information. Your insurer should provide you with a brief description of benefits that quickly reviews what is covered and the amount of your copay. You are also entitled to view your actual health insurance contract, which includes a detailed summary of benefits. If you have a specific question (“Which doctor can I use?” “What is my copay for non-specialist doctor’s visits?”) you can ask. Your insurer is currently required to cover a minimum of one preventative care visit a year, and at least one sample of every major birth control method (pills, implants, IUDs, etc.) must be available for free.

Changes to the health coverage through the Affordable Care Act (“Obamacare”), Medicaid, and Medicare are unlikely to set in before 2018 or 2019, although we will see substantial activity in Congress in 2017. Until we know exactly what’s going to happen, it’s hard to know how best to prepare, but it is wise to assume you may lose some or all of your health care coverage. Take advantage of the coming months to get all your routine examinations and testing done, get fitted with a long-acting reversible contraceptive if that applies to you, and stock up on medications and supplies. Request “vacation fills” from your care provider so your pharmacy can override medication limits, and if necessary, call around to find a pharmacy that carries your meds in bulk. Because others are also racing to do this, it may be you can only get an appointment weeks or even months from now: make that appointment anyway. If you’re in school and about to graduate, take advantage of student health while you can! If you aren’t currently insured, explore your options, which may include a state or federal healthcare exchange, private insurance, or joining a parent’s insurance policy if you are under 25.

If at any point you lose health coverage or your plan is drastically modified: Community clinics — including free and low-cost clinics for the public at colleges, teaching hospitals and nursing schools — can be an excellent resource for basic health care needs. Some public health departments also operate clinics that may offer services you can use. If you are LGBQT, check up on clinics before going. Those affiliated with the Catholic Church may be hostile and unwilling to meet your health care needs, and other organizations may also have a history of LGBQT discrimination. (Try Googling for the name of the clinic and “controversy” or “LGBQT” to see what comes up.) You may also be able to obtain low-cost catastrophic insurance that will cover major accidents, though not preventative care and day-to-day health issues, and it will include a high deductible.

Talk to your doctor’s office now about what will happen if you lose your insurance or your insurer refuses to cover some services. Paying cash can be expensive, but some doctors’ offices offer discounts to cash patients or are willing to help with payment plans.

Sexual healthcare: Get current with your STI screenings and general sexual⁠ healthcare and ask any sexual partners to do so as well. These services may become more costly, more spare or harder to access. In addition, if you or a partner⁠ have an STI⁠ , treatment as soon as possible not only is always a good idea, it’s ever more important when healthcare may become more difficult to access or more costly, particularly for serious infections like HIV or complications like cervical cancer. Get up to date with your vaccinations now, too, including for HPV and Hepatitis.

With sexual healthcare services — including STI diagnostics and treatment — potentially becoming harder to access or less affordable, safer sex is all the more important. If you and your partners don’t already use barriers to reduce the risk of STIs, now is a very good time to take that more seriously and start.

If you or your sexual partners can become pregnant and you do NOT want to parent, or know you are or will be unable to parent in some way (such as being unable to afford it):

Long-acting methods of contraception⁠ , like IUDs or the implant, are currently covered by all insurance providers under the stipulations of the Affordable Care Act, whether you have private, group, or subsidized insurance, so if you do not want to become pregnant, and parent, in the next four years, at a minimum, now is the time to go and get those methods. They soon may not be covered, and abortion⁠ access has already become very limited before now. It is very likely to become even harder to access soon. If you do not want to use methods like IUDs or implants, but want to get a method now you may be able to use for a few years, ask your healthcare provider⁠ about cervical barriers.

Emergency contraception pills have a shelf life of around three years, and are also covered by most health plans and much public health. Stock up if you can, for yourself and/or others.

Find out the names of the abortion providers closest to you currently. In the event abortion services shut down or become even more limited, knowing those names can give you a place to start in seeking that healthcare or help.

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