Speaker Series Webinar: “Navigating Your Health Care Journey”

• Social Workers work in hospitals, rehab hospitals, skilled nursing facilities, infusion centers, for home care agencies, palliative care, hospice care and more
• Found in government agencies like the aging office and public assistance office
• Find your local social worker: www.helpstartshere.org

• When a social worker is apart of a health care system, their services are included and not billed separately
• If you see a social worker for a mental health issue, they might be able to bill your insurance but it is not a guarantee.

1. Involve someone in your immediate world who can go to appointments with you and ultimately support you
   • You do not need to tell family members or people who will not support you
2. Talk to your immediate supervisor and/or human resource representative
   • You may qualify for FMLA or short term disability benefits
3. Talk to a therapist, if needed

• When supporting a patient, ask “what do you need or want?”
  • Would you like a check-in call once a week?
  • Would you like me to take you out to lunch?
  • Can I help you go through your insurance paperwork and bills?
• If you can, delegate tasks between people who can support you
• If you cannot rely on a community, talk to your social worker
• Programs to help alleviate caregivers:
  • Each state has RESPITE programs to give caregivers breaks
  • NORD (National Organization for Rare Disease) offers RESPITE grants to help pay for primary care givers time away
  • If you are on Medicaid, there are additional programs through waivers that can help pay for hands on care for you. www.rarediseases.org

• Bring a partner or close person with you (even if it is on facetime)
• Bring a list of questions you want to know from your doctor

1. Seek a second opinion or change doctors entirely
2. If there is negligence, you can file a report with the governing body for that provider’s profession and state
   1. PA residents: report online to the Pennsylvania Department of State
3. If you are in a facility: you can talk to the nurse manager then patient advocate/ patient representative or risk management office
4. In a skilled nursing facility (SNF), start with the nurse, then nurse manager, then go right to the director of the facility. If that doesn’t resolve your issue, then contact your county Ombudsmen’s office.
5. For privately paid caregivers and or home health aide, you can contact the state’s licensing board and file a formal complaint

• Commonly, hospitals and rehabs will say that they are no longer going to get reimbursed by your health insurance after a certain period of time
• Even if a discharge is legitimate, you can fight with a discharge planning meeting which a physician, the rehab team, and a social worker will attend
  • Explain how you feel that this is an unsafe discharge or you/your loved one is being discharged to the wrong level of care
• Communicate with patient advocates, representatives, or risk managers and if your matter is still unresolved you can consult a lawyer about your next steps

For Medicare patients

• The hospital must provide a form “Important Message from Medicare” or IMM that outlines appeal process which includes Qualify Improvement Organization

A legal document that communicates to medical providers and loved ones what you want in terms of care (anyone can make one and should be done when a person turns 18 and can vote)

Two Parts:

1. Living Will: the specific treatments you would want or not want to keep you alive such as being put on a ventilator or feeding tube (this can be as specific as you want)
2. Advance Directive: the medical power of attorney (Health proxy, health care representative, or durable power of attorney) is a person you appoint to be your voice when you are unable to speak for yourself

Sample Copies: www.caringinfo.org or www.fivewishes.org

A physiatrist or rehab medical doctor will do an assessment of a patient to determine the level of care they require from their prior level of functioning before diagnosis, the patients medical progress, and potential for recovery

Acute Rehab: the highest and most intense level of rehab that can be a free standing hospital or a unit in general hospitals. The criteria is the ability to participate in at least 3 hours of PT/OT/ST every day. The amount of time that a patient will stay depends on their progress and insurance coverage. Acute rehab is paid for out of the same pot or benefit as general hospital care.

Subacute Rehab or Skilled-Nursing Facility (SNF): the next level down, where a patient is normally discharged if they still need therapies but cannot handle the intensity of acute rehab. Insurances usually have a separate benefit category for subacute or skilled rehab. For Medicare patients, you may hear that days 1-20 are paid at 100% and days 21-100 are mostly paid for by Medicare, with the balance being paid by a medigap policy.

Outpatient Rehab: when a patient is discharged home, but is not considered home bound. It may occur several times a week and is usually covered by all kinds of insurance

Home Rehab: when a patient is homebound and receives care 1-2 times a week. Insurances usually cover the visiting rehab or visiting nurse agency.

Long-term Care Rehab: maintenance therapy; typically not restorative care to maintain a patients current level of functioning. Long-term care is paid privately, through Medicaid, or Long-term care insurance.

• May include visiting nurses, home therapies like PT, OT and speech therapy as well as social workers, home health aids, and companions
• Insurance is very limited for in-home care
• Medicare and most commercial insurance will pay for “skilled” care which means treatment is from a licensed provider that is intermittent and is expected to end like administering medication
• Custodial care is often what patients need once the skilled care is over and is only paid through Medicaid, private pay, or long term care insurance

• Coverage for equipment or devices at home depend on your insurance and the type of equipment needed
• Medicare has very strict guidelines so it will deny devices not for self-help, hygienic, and comfort or convenience
  • will not pay for non-reusable items like pads and diapers
• Commercial insurance and Medicaid have different rules so it may be easier to get things covered
  1. Start the process with a doctors appointment or rehab therapist for a prescription with your diagnosis, its CPT code, the item needed, and the length of time you need for the item.
  2. Go to a local medical equipment provider or supply store and talk to them about what you need. They might be able to provide a prescription or order sheet that your doctor can complete with a specific list that your insurance company will ask for
  3. Call your insurance and ask for what documentation they will need to approve your piece of equipment. They may need your doctor to document something in their progress notes during your most recent office visit.
  4. Organizations like Goodwill accept donated medical equipment and then resell them for a cheaper price

• Supportive Care, designed not to cure a disease or disorder but optimize a patient’s quality of life
• Called when a patient has a serious, complex, or terminal illness who experiences issues like pain, eating inabilities, mobility, and coping.
  • refers to patients who have pain that cannot be managed by their primary care doctor, or if they have multiple diagnoses that need someone to help with all of the different symptoms that come along with them.
• Usually an entire time of palliative care providers including a physician, advance practice professional, nurse, and social worker
• Can be provided in hospitals, SNFs, at home, or in a doctor’s office
• Mostly covered by insurance
• Can also be a bridge between seeking curative treatment and going on hospice care.

• Our organization!
• Habitat Humanity often helps with building ramps
• St. Vincent de Paul, a catholic organization, that helps with a wide variety of financial needs
• Service organizations like American Legions, Lions Clubs, etc. may help with home modifications and some may be recycled medical equipment and supplies
• Therapist may also know specific organization

Medicare

• For people over 65, are deemed permanently disabled per SSA, or have end stage renal disease and are receiving dialysis treatments
• Does not pay for 100% of health care costs and will generally cover 80% of costs after some deductible rules for hospital and doctor’s visits
• Prescription coverage will vary depending on the plan that someone has
• Medicare is a federal program and is paid for by the Medicare taxes that are taken out of our paychecks
• Apply online through Medicare.gov or by calling SSA

Part A: Hospital care

Part B: Outpatient services including doctor’s office visits

Part D: Prescriptions

Part C: when parts A,B and sometimes D are combined into what is called a Medicare Advantage Plan. This is when private insurance companies take over managing someone’s Medicare coverage

Medicaid

• A combination of federal and state program, managed through the county you live in and is typically offered to those who have low income or resources
• Any age can qualify with different requirements such as age, income, and where you live
• Apply through your state or county assistance office
  • Most states have an online option or a paper application
• There are different variations of Medicaid to cover kids, pregnant women, the elderly, immigrants, and the working disabled
• Each state has some flexibility on what kinds of Medicaid plans they offer, (more if they chose to explain Medicare through the Affordable Care Act)

www.medicare.gov; www.ssa.gov; www.medicaid.gov

1. Start with your state’s SHIP program or State Health Insurance Assistance Program
   • Funded through the US government and are meant to provide objective, unbiased counseling about Medicare, choosing plans, and using your coverage www.shiphelp.org
2. Look for help through local pharmacies, private case management companies, your health care social worker, a broker, or an individual insurance company
   • For those turning 65, brokers and sales agents want your business and will be ruthless so NEVER sign up for a program over the phone and ask for specifics in writing
3. Talk to your medical providers to ensure that they are in network with the plans you chose
   • The most up to date information about participation in a Medicare plan is not with Medicare or the insurance company, it is with your medical provider. Often it takes months for a provider to be added or removed from the database of an insurance company

1. Ask to get a copy of the denial
2. Discuss with your doctor the reason for the denial.
   • Make sure that the doctor’s office insurance information is correct to avoid denials because of a clerical error
3. Follow the appeal steps on the denial letter
   • May require additional medical information, peer to peer review, or a meeting between your doctor and insurance company’s doctor
4. After peer to peer review, there may be other levels of appeal including a review by the medical doctor of the insurance company or an external independent reviewer

Long-term disability

• Apply for SSDI in person, online, over the phone, or using an attorney www.ssa.gov
• A lengthy process meant to be for people who are expected to be disabled at least a year or more likely much longer

For private or employer based short term or long term disability benefits

• Each plan is different in applying and utilizing benefits
• Most will include forms for physicians to complete
  • Utilize a social worker to get the physicians attention to complete any forms asap
• If your employer or plan provides short term disability benefits, they may begin after you have used a certain number of sick or PTO days
  • Typically cover up to 6 months or and then your provider will recommend a long-term policy and/or applying for SSDI

• NORD Emergency Relief for GBS patients: helps pay for living expenses like mortgage, rent, a car repair, or utility bill www.rarediseases.org
• The Assistance Fund (TAF) for CIDP patients: helps pay for copays, coinsurance, and deductibles https://tafcares.org/
  • Get on the waitlist!
• Accessia for MMN patients: waitlist for two funds one for privately insured patients, and one for publicly insured patients. https://accessiahealth.org

If you have commercial or no insurance and have at least one expensive medication, check out your medication’s manufacturer called a PAP or Pharmaceutical Assistance Program.

• Some PAP’s have free trials so that you do not have to pay a signification amount to test whether a medication is for you
• Our website has a full list of PAPs: https://www.gbs-cidp.org/support/resources/financial-assistance-resources/

If you are getting care through an infusion company, infusion site or hospital:

• Ask whether these organizations have hardship or charity care programs
  • Usually ask for documents of income and liquid assets like money in the back
• Check if you are eligible for your state’s Medicaid, SNAP (Food Stamps), or LIHEAP (Utility Financial Assistance).
• Check the directory for financial assistance programs at the Patient Advocate Foundation https://www.patientadvocate.org/explore-our-resources/national-financial-resource-directory/

Worry

• Worry is apart of anxiety
• Worry is temporary where other part of your life and day to day functioning are not affected
• Worry is situational due to a specific event

Anxiety

• Can be diagnosed when there is persistent worry and may feel ongoing physical effects, changes to your thoughts, and you cannot carry out your normal daily activities like missing work and avoiding situations that cause anxiety
• Extreme anxiety can even cause panic attacks and may manifest as symptoms like having heart attacks (seek immediate care if your anxiety rises to this level)

• Everyone feels down or sad, but the difference is its intensity, duration and whether that feeling starts to affect other areas of your life.
• If you are just feeling down, then usually those feelings will go away after a period of time, or during most of the day.
• Screening questions for depression will ask whether someone has difficulty sleeping or sleeping too much; similar questions will be asked about eating, questions about self harm or suicide thoughts
• Depression will occur over several months and usually doesn’t go away without some kind of professional intervention.

• Start with your primary care physician and make sure that any medical issues are figured out
  • Your primary doctor can prescribe medicine or provide local resources for mental health providers
• Decide whether or not you want to try medication or talk therapy
  • Most psychiatrist only prescribe medication rather than talk therapy
• Check your insurance for providers near where you live
• PsychologyToday or goodtherapy.org are two good search engines to also find a therapist. https://www.psychologytoday.com/ https://www.goodtherapy.org/
• Find support groups with similar diagnosis and experiences