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Types and sources of insurance featuring but not limited to health insurance.

1. Latest News

1.1. Social Security Administration Service Guidance-March 2021

Social Security remains committed to providing uninterrupted benefits and vital services the public relies on, especially during the current coronavirus pandemic.  As an important part of the community, I am asking for your help to share important information with your members.  Despite challenges government and businesses face at this time, we want people to know we remain ready and able to help them by phone with most Social Security matters.  

Your members can speak with a representative by calling their local Social Security office or our National 800 Number.  We provide local office phone numbers conveniently online with our Social Security Office Locator.

Although our offices are not providing service for walk-in visitors, we may be able to schedule an appointment for limited, critical issues if we cannot help someone by phone and if they cannot get the information they need or conduct their business online.

Please encourage your members to call or take advantage of our secure and convenient online services to:

  • Apply for RetirementDisability, and Medicare benefits,

  • Check the status of an application or appeal

  • Request a replacement Social Security card (in most areas),

  • Print a benefit verification letter, and

  • Much more......Most business with SSA can be done online but we know that many people still rely on phone or in-person help.  That’s why we want people to know they can still count on us by phone.

Lastly, we know that getting medical and other documentation can be difficult due to the pandemic.  We continue to extend deadlines wherever possible. Social Security Administration 

1.2. Social Security Advisory Board-COVID Guidance

The Social Security Advisory Board (SSAB) has provided COVID-19 Guidance

The Coronavirus (COVID-19) pandemic has affected many aspects of our lives and how we interact with government agencies like the Social Security Administration. The links below collect important information from Social Security and other agencies. All links are to official government websites.

1.3. CARES ACT-COVID-19 Stimulis #3 March 2020

Federal Stimulus Advocacy: After a great deal of advocacy and complex debate, the third COVID-19 stimulus package, known as the CARES Act, was signed into law by President Trump last Friday. Thank YOU to everyone who took action on this bill! The following overview was shared with us by advocates in Washington.


Important Points to Know About the CARES Act:

  • SSI and SSDI recipients will receive cash rebates if they receive an annual SSA-1099 or filed taxes. If they do not have either of these forms, they will need to complete a 2019 tax filing or look for a special form from the IRS to complete.
  • Money Follows the Person funding and the Spousal Impoverishment protections were extended until November 30, 2020.
  • The ability to waive provisions of the Individuals with Disabilities Education Act were removed from the draft law.
  • $30 billion was allocated to the Elementary and Secondary Schools Emergency Relief Fund, which can be used for IDEA, 504, and other disability instruction and services. It will be critical for state and local advocates to immediately talk with their state Departments of Education and local school districts about how those funds will be used to support students with disabilities.
  • $150 billion was allocated to state and local governments. As with the school funds, stakeholders will need to advocate for the use of these funds to provide blind, deaf, developmental disability, vocational rehabilitation, and other disability services.
  • Availability of Small Business Administration loans for non-profit agencies.
  • $85 million additional funds for Centers for Independent Living and $50 million for Aging and Disability Resource Centers to address the COVID crisis.


The CARES Act Also is Missing a Number of Important Items:


  • Lack of dedicated Medicaid funding for home and community based services (HCBS)
  • Lack of funding to support direct service professionals and direct service agencies
  • Lack of funding to ensure personal protective equipment for home care providers and family care providers
  • Lack of funds to support family care providers, family leave, and sick leave to support people with disabilities
  • Lack of directives to ensure information about the public health emergency is described in accessible formats


Action Alert: Based on the above, we need to ask for your help contacting Congress again today using this email action alert. We want to thank members of Congress for the work we have done so far, but we also need to let them know that there still remains great need for people with disabilities during this crisis.


DACA Immigration Advocacy: Some of you may know that there is an important case facing immigrants with DACA status (DACA means Delayed Action for Childhood Arrivals). The Trump Administration terminated DACA and there are several legal challenges to stop the termination of DACA. See this link for more info about the case and this link for a social media toolkit to support those who have DACA, many of whom have disabilities or support a person with a disability.


Illinois SNAP Benefits Temporary Increase: On Friday, Governor J.B. Pritzker announced that Illinois will be receiving funds under the federal Families First legislation that will result in a temporary increase of Illinois SNAP benefits (food stamps). SNAP benefits will see a relatively big jump. For example, a person with a disability who had previously received $16 per month under SNAP would see $194. The amounts will vary. Also, the website to watch for State of Illinois updates on COVID-19 is: https://coronavirus.illinois.gov/s/. See this link for the Governor's Saturday announcement about expanding and expediting Medicaid coverage.


Healthcare Rationing: A topic that is getting a great deal of attention right now is whether medical systems may discriminate against people with disabilities in life saving situations and/or with ventilator support during the COVID-19 crisis. Across the nation, disability advocates began pushing through media and through federal complaints to fight to save disabled lives. On Saturday, the U.S. Department of Health and Human Services Office of Civil Rights (OCR) put out guidance that stated that disability (and other) discrimination would not be allowed. However, advocates need to work hard to make sure that states and local health providers do not discriminate in emergency situations. This situation is rapidly evolving, including in Illinois. Stay tuned.


  • ADDITIONAL FUNDING FOR AGING AND DISABILITY RESOURCE CENTERS. $5 million from October 1, 2020 to November 30, 2020. Google your state and the term “Aging and Disability Resource Centers” to find support and information for the disability community.
  • Administration for Community Living Funding – AGING AND DISABILITY SERVICES PROGRAMS. $955 million through September 30, 2021 for coronavirus relief – domestic and international. This includes $85 million for Centers for Independent Living.
  • Extension of funding for Money Follows the Person and inapplicability of spousal income for eligibility for home and community-based services through November 30, 2020.
  • CORONAVIRUS RECOVERY REBATES.  Individuals will receive up to $1,200 and married couples who file taxes jointly will receive up to $2,400.  There is a $500 supplemental payment per child.  To receive these payments, a person must have a Social Security number.  Asset and income limits, such as those in place for SSI, do not apply because this payment is being treated like a tax rebate rather than income.  People are required to have filed tax returns with the IRS in order to receive payments.
  • Rx 90-Day Supply.  Medicare can provide an extra 90-day supply of individual’s medications due to COVID-19.
  • Social Security Administration Administrative Funding for SSA personnel and related office SUPPORT. $300,000 to ensure continued processing of disability and retirement claims through September 30, 2021.
  • Employee retention credit for employers subject to closure due to COVID–19. Credits due to the Federal Old-Age and Survivors Insurance Trust Fund and the Federal Disability Insurance Trust Fund to assist with employee retention during the COVID-19 crisis.
  • Delay of payment of employer payroll taxes. Federal Old-Age and Survivors Insurance Trust Fund, the Federal Disability Insurance Trust Fund and the Social Security Equivalent Benefit Account will be held harmless regarding any funds that were appropriated due to the COVID-19 crisis.

1.4. CMS approves state emergency 1135 waivers March 2020


Trump Administration Approves 34th State Request for Medicaid Emergency Waivers

Expeditious wavier approvals ensure that CMS provides states with maximum flexibility needed to care for Medicaid beneficiaries during coronavirus public health emergency

Under President Trump’s leadership, the Centers for Medicare & Medicaid Services (CMS) approved its 34th state Medicaid waiver request under Section 1135 of the Social Security Act.  Granting these waivers is made possible by the President’s national emergency declaration to ensure that CMS is providing state partners with the maximum flexibility needed to care for Medicaid beneficiaries during the coronavirus public health emergency. 

These Medicaid 1135 waiver approvals were approved in record time, all within days of the states’ submission of requests and had an average approval time of less than six days. Other types of Medicaid waivers can require months of negotiation, but in light of the urgent and evolving needs of states during COVID-19 CMS developed a streamlined template for facilitate expedited application and approval of Medicaid 1135 waivers. CMS will continue to work with additional states that submit requests to promptly review and approve their applications.

These approvals provide states new flexibilities to focus their resources to provide the best possible care for their Medicaid beneficiaries in response to the coronavirus outbreak. In addition to the Section Medicaid 1135 waiver approvals, CMS has also approved eight state requests to invoke emergency flexibilities in their programs that care for the elderly and people with disabilities in their homes and communities. These approvals give states a range of flexibilities including the ability to enroll out-of-state or new providers more quickly, temporarily delay Medicaid hearings to focus resources, and temporarily suspend prior authorization requirements. 

“Thanks to the decisive leadership of President Trump during this emergency, CMS is responding to urgent requests from governors for regulatory relief to more quickly and effectively care for their most vulnerable citizens” said CMS Administrator Seema Verma. “These waivers allow states to make extraordinary adjustments to their Medicaid programs to meet the unprecedented demands of this emergency.”

CMS will continue to expeditiously review and approve, as appropriate, all Section 1135 waivers and other requests that the agency receives in continuation of the Trump Administration’s commitment to the coronavirus response that is locally executed, state managed and federally supported.  The most recent addition of Medicaid 1135 state approvals includes New York, Colorado, Hawaii, Idaho, Massachusetts, Maryland, Connecticut, Delaware, Minnesota, Pennsylvania and Wyoming.  They join the following states with already-approved 1135 approval letters: Iowa, Indiana, Rhode Island, Kansas, Kentucky, Missouri, Oregon, North Dakota, South Dakota, Oklahoma, Alabama, California, New Hampshire, New Mexico, New Jersey, Arizona, Virginia, North Carolina, Mississippi Louisiana, Illinois, Washington and Florida.  All Section 1135 approval letters will be posted here as they are issued. 

CMS provides guidance to states on how to apply for Section 1135 waivers through the Medicaid Disaster Response Tool Kit, which can be found here. To further the agency’s efforts, CMS has developed checklists and tools to expedite  COVID-19 virus requests and approvals for waivers and other commonly requested flexibilities during the current public health emergency.  Home and community based program reosurces can be found here

These waivers, and earlier CMS actions in response to coronavirus, are part of the ongoing White House Coronavirus Task Force efforts. To keep up with the important work the task force is doing in response to coronavirus, visit www.coronavirus.gov. For a complete and updated list of CMS actions, and other information specific to CMS, please visit the Current Emergencies Website.  Additionally, CMS has launched a dedicated, Medicaid.gov, COVID-19 resource page that will be continually updated with relevant information. 

1.5. Telehealth Access for Medicare and Medicaid-March2020

President Trump Expands Telehealth Benefits for Medicare Beneficiaries During COVID-19 Outbreak

Mar 17, 2020 


The Trump Administration today announced expanded Medicare telehealth coverage that will enable beneficiaries to receive a wider range of healthcare services from their doctors without having to travel to a healthcare facility. Beginning on March 6, 2020, Medicare—administered by the Centers for Medicare & Medicaid Services (CMS)—will temporarily pay clinicians to provide telehealth services for beneficiaries residing across the entire country.

“The Trump Administration is taking swift and bold action to give patients greater access to care through telehealth during the COVID-19 outbreak,” said Administrator Seema Verma. “These changes allow seniors to communicate with their doctors without having to travel to a healthcare facility so that they can limit risk of exposure and spread of this virus. Clinicians on the frontlines will now have greater flexibility to safely treat our beneficiaries.”

On March 13, 2020, President Trump announced an emergency declaration under the Stafford Act and the National Emergencies Act. Consistent with President Trump’s emergency declaration, CMS is expanding Medicare’s telehealth benefits under the 1135 waiver authority and the Coronavirus Preparedness and Response Supplemental Appropriations Act. This guidance and other recent actions by CMS provide regulatory flexibility to ensure that all Americans—particularly high-risk individuals—are aware of easy-to-use, accessible benefits that can help keep them healthy while helping to contain the spread of coronavirus disease 2019 (COVID-19).

Prior to this announcement, Medicare was only allowed to pay clinicians for telehealth services such as routine visits in certain circumstances. For example, the beneficiary receiving the services must live in a rural area and travel to a local medical facility to get telehealth services from a doctor in a remote location. In addition, the beneficiary would generally not be allowed to receive telehealth services in their home.

The Trump Administration previously expanded telehealth benefits. Over the last two years, Medicare expanded the ability for clinicians to have brief check-ins with their patients through phone, video chat and online patient portals, referred to as “virtual check-ins”. These services are already available to beneficiaries and their physicians, providing a great deal of flexibility, and an easy way for patients who are concerned about illness to remain in their home avoiding exposure to others.

 A range of healthcare providers, such as doctors, nurse practitioners, clinical psychologists, and licensed clinical social workers, will be able to offer telehealth to Medicare beneficiaries. Beneficiaries will be able to receive telehealth services in any healthcare facility including a physician’s office, hospital, nursing home or rural health clinic, as well as from their homes.

Medicare beneficiaries will be able to receive various services through telehealth including common office visits, mental health counseling, and preventive health screenings. This will help ensure Medicare beneficiaries, who are at a higher risk for COVID-19, are able to visit with their doctor from their home, without having to go to a doctor’s office or hospital which puts themselves or others at risk. This change broadens telehealth flexibility without regard to the diagnosis of the beneficiary, because at this critical point it is important to ensure beneficiaries are following guidance from the CDC including practicing social distancing to reduce the risk of COVID-19 transmission. This change will help prevent vulnerable beneficiaries from unnecessarily entering a healthcare facility when their needs can be met remotely.  

President Trump’s announcement comes at a critical time as these flexibilities will help healthcare institutions across the nation offer some medical services to patients remotely, so that healthcare facilities like emergency departments and doctor’s offices are available to deal with the most urgent cases and reduce the risk of additional infections. For example, a Medicare beneficiary can visit with a doctor about their diabetes management or refilling a prescription using telehealth without having to travel to the doctor’s office. As a result, the doctor’s office is available to treat more people who need to be seen in-person and it mitigates the spread of the virus.

As part of this announcement, patients will now be able to access their doctors using a wider range of communication tools including telephones that have audio and video capabilities, making it easier for beneficiaries and doctors to connect.

Clinicians can bill immediately for dates of service starting March 6, 2020. Telehealth services are paid under the Physician Fee Schedule at the same amount as in-person services. Medicare coinsurance and deductible still apply for these services. Additionally, the HHS Office of Inspector General (OIG) is providing flexibility for healthcare providers to reduce or waive cost-sharing for telehealth visits paid by federal healthcare programs.

Medicaid already provides a great deal of flexibility to states that wish to use telehealth services in their programs. States can cover telehealth using various methods of communication such as telephonic, video technology commonly available on smart phones and other devices. No federal approval is needed for state Medicaid programs to reimburse providers for telehealth services in the same manner or at the same rate that states pay for face-to-face services.

This guidance follows on President Trump’s call for all insurance companies to expand and clarify their policies around telehealth.

To read the Fact Sheet on this announcement visit: https://www.cms.gov/newsroom/fact-sheets/medicare-telemedicine-health-care-provider-fact-sheet

To read the Frequently Asked Questions on this announcement visit: https://www.cms.gov/files/document/medicare-telehealth-frequently-asked-questions-faqs-31720.pdf

This guidance, and earlier CMS actions in response to the COVID-19 virus, are part of the ongoing White House Task Force efforts. To keep up with the important work the Task Force is doing in response to COVID-19 click here www.coronavirus.gov. For information specific to CMS, please visit the Current Emergencies Website.



Get CMS news at cms.gov/newsroom, sign up for CMS news via email and follow CMS on Twitter CMS Administrator @SeemaCMS@CMSgov, and @CMSgovPress.

1.6. National Disability Navigator Resource Collaborative

The Mission of the National Disability Navigator Resource Collaborative (NDNRC) is to provide cross-disability information and support to Navigators and other enrollment specialists thereby ensuring people with disabilities receive accurate information when selecting and enrolling in insurance through the Affordable Care Act Marketplaces. SEE: NDNRC fact sheets for more detail.

The purpose of the project is to assist the development of cross-disability competence in ACA CMS funded navigator programs and consider how to assist state-based navigators, connectors and assisters. An estimated 3.5 million people between the ages of 16 and 65 with pre-existing medical conditions or disabilities are currently uninsured. Persons with disabilities lacking current health insurance face at least the following options as key elements of the Affordable Care Act go into effect in January 2014: Medicaid in their state, possible Medicaid buy-in in their state, possible Medicaid expansion in their state, and Exchange-Marketplace insurance coverage.

The Collaborative will supplement federal agency communications to ensure consistency and accuracy of message. The project will share project work with, and seek ACA enrollment experience from the Consortium for Citizens with Disabilities (CCD) Task Force on Health.

The project will develop disability-content materials, including a technical assistance guide; a dedicated website with URL that will include all materials as well as state-specific information, resources, and experiences; provide on-going TA to navigators via typical TA methods (e.g. webinars, topic-specific fact sheets, short issue briefs, newsletters, list serves); and will discuss the feasibility of providing "hands-on" technical assistance to navigators and/or their host organizations.

1.7. Affordable Care Act Implications - Effective 10/1/13

What is the Affordable Care Act?

The Affordable Care Act (ACA) refers to the Patient Protection & Affordable Care Act (ACA) that became law in March 2010.  On June 28, 2012, the United States Supreme Court upheld the constitutionality of most of the ACA in National Federation of Independent Business v. Sebelius. However, the Court's opinion was that states cannot be forced to participate in the ACA's Medicaid expansion under penalty of losing their current Medicaid funding.  For those states that have chosen to expand Medicaid under the ACA, beginning in 2014 coverage for the newly eligible adults will be fully funded by the federal government for three years.  Federal funding to the states will go down to 90% by 2020.

Coverage through the healthcare marketplaces will begin in every state on January 1, 2014, with enrollment beginning October 1, 2013 through March 31, 2014. States can choose one of three options:

  • build either a fully state-based marketplace
  • enter into a state-federal partnership marketplace
  • or default into a federally-facilitated marketplace

The Affordable Care Act (ACA) directs the Secretary of Health and Human Services (HHS) to establish and operate a federally-facilitated marketplace in any state that is not able or willing to establish a state-based marketplace. States entering into a state-federal partnership marketplace may administer plan management functions, in-person consumer assistance functions, or both, and HHS will perform the remaining exchange functions.  In a federally-facilitated marketplace, HHS will perform all marketplace functions.   It is important to note that per CMS guidance, there is no deadline for states to implement the Medicaid expansion. Requirements for legislation to implement the Medicaid expansion vary across states; some states require authorizing language and/or budgetary authority to implement the expansion while others do not. Go to the Medicaid Expansion versus traditional Medicaid  section to see whether your state agreed to expand Medicaid with Affordable Care Act funding or has decided to continue to offer traditional Medicaid.  

The ACA aims to increase the quality and affordability of health insurance, lower the uninsured rate by expanding public and private insurance coverage, and reduce the costs of health care for individuals and the government. It provides a number of mechanisms—including mandates, subsidies, and insurance exchanges—to increase coverage and affordability.

What is good about the Affordable Care Act?

  • available coverage for Americans with pre-existing conditions - Also, health plans can no longer limit or deny benefits to children under 19 due to a pre-existing condition. View latest information on pre-existing condition insurance plans.
  • individuals under age 26 may be eligible to be covered under their parent's health plan
  • ends lifetime limits on coverage on most benefits
  • ends arbitrary withdrawals of insurance coverage due to mistakes on insurance applications
  • insurance companies must now publicly justify any unreasonable increases in premiums
  • beneficiaries' premium dollars must be spent primarily on health care – not administrative costs


  • restricts annual dollar limits on coverage - annual limits on health benefits will be phased out by 2014


  • Changes Medicare prescription drug coverage to reduce the out-of pocket cost impacts of the "doughnut hole" coverage gap.  Medicare will gradually phase in additional subsidies in the coverage gap for brand-name drugs (2013) and generic drugs (2011), reducing the beneficiary payment in the gap from 100 percent to 25 percent by 2020. Between 2014 and 2019, the law reduces the out-of-pocket amount that qualifies an enrollee for catastrophic coverage, further reducing out-of-pocket costs for those with relatively high prescription drug expenses.


What is still not fixed under the ACA?
Your access to wheelchairs and related medical equipment, assistive technologies, prescription drugs and medical supplies is still at risk. Pay close attention to what rehab and hab visits are available under each plan and what medical equipment, prescription drugs and medical supplies are available.

Who can help me enroll in the right program?

States vary on what type of assistance is available to help you enroll in a health insurance program. Here is a list of the different programs in different states:

Consumer assistance programs (CAPs) - now

CAPs serve all consumers at different income levels and with varying health coverage, including private insurance, Medicare, Medicaid and low-income programs such as the Children's Health Insurance Program (CHIP) and the Healthy Families Program.[1]

CAPs provide on-on-one education about public and private healthcare options; assist with eligibility, enrollment and plan selection; help navigate the healthcare system; troubleshoot problems; assist with consumer appeals; capture information on successes and failures to share with government agencies and improve programs. CAPs can be found at non-profit organizations contracting with a state and state ombudsman programs. CAPs funding is provided to states from the federal government.

Navigators – start date October 1, 2013

Navigators provide assistance to people enrolling in the healthcare marketplaces and provide services and referrals to individuals not enrolling in the healthcare marketplaces.

Navigators educate consumers on healthcare options and assist with eligibility, enrollment and plan selection. Healthcare marketplaces must create a navigator grant program. 

Navigators are not permitted to receive funding from insurers but marketplace operating funds for a navigator program must be made available, Medicaid funds may be made available.


In-person assisters – start date October 1, 2013

In-person assisters provide assistance to people enrolling in the healthcare marketplaces and provide services and referrals to individuals not enrolling in the healthcare marketplaces.

In-person assisters conduct outreach and education; assist with eligibility, enrollment and health insurance plan selection.  Optional program.

The marketplace or an entity contracting with the marketplace can provide IPAs. 

IPAs are funded by federal marketplace grants.  States can apply for marketplace grants. State-based and Consumer Assistance Partnership marketplaces can obtain federal funds to create and operate these programs.


Insurance Agents and Brokers
Brokers act on behalf of the consumer. They can be compensated by the consumer or receive compensation from an insurance company. Agents are loyal to an insurance company and sell, solicit, or negotiate insurance on

behalf of the insurer. They are compensated by the company (or companies) only. An "independent agent" is affiliated with more than one company. A "captive agent" works for or on behalf of one insurance company. (When you buy a policy directly

from an insurance company, you are probably going through an in-house agent.) Producer is a broader term that encompasses both agents and brokers. A producer is defined as someone who sells, solicits, or negotiates insurance.

Medicaid Expansion vs. Traditional Medicaid
Medicaid Expansion

State coverage of benefits and services varies from state to state. Medicaid Expansion vs. Traditional Medicaid.

  • 26 states – Medicaid expansion under the Affordable Care Act
  • 22 states – Traditional Medicaid
  • 3 states – states are debating what to do


Traditional Medicaid

Traditional Medicaid coverage is available for the following populations:

  • Individuals with disabilities
  • Individuals who are eligible for Medicare and Medicaid (dual-eligibles)
  • Women who are pregnant, income eligible
  • Terminally ill hospice patients
  • Individuals who qualify for long term services and supports
  • 'Medically frail/special medical needs' individuals
  • Temporary Assistance for Needy Families (TANF)
  • Some foster care and adopted children

What is a healthcare marketplace?

A healthcare marketplace (formerly called healthcare exchanges) allows individuals and employers to easily compare and evaluate health insurance plans: compare quality and affordable health insurance options; apply for tax credits; and, receive enrollment support.

Healthcare Marketplaces

  • Federal marketplace - 27 states
  • Partnership marketplace - 7 states
  • State-based marketplace - 16 states plus the District of Columbia


Small Business Health Options Program (SHOP)
The Small Business Health Options Program (SHOP) is a new program that simplifies the process of buying health insurance for your small business.

For 2014, the SHOP Marketplace is open to employers with 50 or fewer full-time employees. The advantages of using SHOP include:

  • You control the coverage you offer and how much you pay toward employee premiums.
  • You can compare health plans online on an apples-to-apples basis, which helps you make a decision that's right for your business.
  • You may qualify for a small      business health care tax credit worth up to 50% of your premium costs. You can still deduct from your taxes the rest of your premium costs not covered by the tax credit. Beginning 2014 the tax credit is available only for plans purchased through SHOP.
  • You don't need to offer coverage to your part-time employees or to dependents.  Starting in 2014, the tax credit is worth up to 50% of your contribution toward employees' premium costs (up to 35% for tax-exempt employers). The small business tax credit is only available if you obtain coverage through the Small Business Health Options Program (SHOP) Marketplace.
    • The tax credit is highest for companies with fewer than 10 employees who are paid an average of $25,000 or less. The smaller the business, the bigger the credit.

Tax credits

Tax credits and other help with costs will make coverage more affordable for individuals, families and small businesses, see Small Business Health Options Program (SHOP) listed above.

If your income falls between 100% and 250% of the federal poverty level ($11,490 to $28,725 for an individual), you may be eligible for a Cost-Sharing Reduction subsidy, which can help lower your deductibles, co-payments and coinsurance. In order to receive Cost-Sharing Reductions, you must purchase a Silver plan on the Marketplace. You will still have a variety of plans from which to choose, but it must be Silver to be able to take advantage of the Cost-Sharing Reduction subsidy.

Many people will qualify for Advanced Premium Tax Credits, a type of subsidy that lowers your monthly premium. You may be eligible for this subsidy if your income falls between 100% and 400% of the federal poverty level ($11,490 to $45,960 for an individual).

Tip: The Cost-Sharing Reduction and Advanced Premium Tax Credits subsidies are not automatic: you must apply for them on the Health Insurance Marketplace. For individuals and families


What is a Qualified Health Plan?

Under the Affordable Care Act, starting in 2014, an insurance plan that is certified by the Health Insurance Marketplace, provides essential health benefits, follows established limits on cost-sharing (like deductibles, copayments, and out-of-pocket maximum amounts). A qualified health plan will be certified by each Marketplace in which it is sold.  Plans are categorized under 4 different levels known as metal levels: bronze, silver, gold and platinum.  The four levels of health plans are differentiated based on their actuarial value that is, the average percentage of health care expenses that will be paid by the plan. The higher the actuarial value (i.e. gold and platinum), the more the plan will pay towards your health care expenses and, therefore, the lower your out-of-pocket costs for things such as:

  • Deductibles – the amount you owe for covered services before insurance kicks in.
  • Co-payments – a fixed amount you pay for a covered health care service.
  • Coinsurance – your share of the costs of a covered health care service.

The downside to the plans that provide more coverage is that you will pay a higher premium each month. On average, a bronze plan will cover 60% of covered medical expenses, and your share will be the remaining 40%. Bronze plan is valued at 60%, Lilver is valued at 70%, Gold is valued at 80% and Platinum is valued at 90%.


For example, Silver Plan A (which generally pays 70% of your health care expenses) offers a high $2,000 deductible and a low 15% coinsurance. Silver Plan B, on the other hand, has a low $250 deductible but a higher 30% coinsurance.

Your monthly health insurance premium will be higher if you choose a higher level plan, such as Gold or Platinum. But you will also pay less each time you visit a health care provider or get a prescription filled. Conversely, your monthly premium will be lower if you choose a Bronze or Silver plan, but you will pay more for each doctor visit, prescription or health care service that you use.  Your share of costs might come in the form of a large deductible with low coinsurance once you've met your deductible. Another plan might offer a low deductible with higher coinsurance.

Essential Health Benefits (EHB) Package

What is an Essential Health Benefits package or EHB?

Essential Health Benefits or EHB refers to health plans that have not been 'grandfathered in' to be included in individual and small group markets[2] both inside and outside of the healthcare marketplaces and must cover EHB beginning January 1, 2014. EHB includes items and services within the following 10 benefit categories:

(1)        ambulatory patient services

(2)        emergency services

(3)        hospitalization

(4)        maternity and newborn care

(5)        mental health and substance use disorder services, including behavioral health treatment

(6)        prescription drugs

(7)        rehabilitative and habilitative services and devices

(8)        laboratory services

(9)        preventive and wellness services and chronic disease management, and

(10)      pediatric services, including oral and vision care


State Medicaid

Under State Medicaid expansion, individuals generally are enrolled in a state's Alternative Benefit Plan (ABP) and specific populations such as individuals with disabilities and other specific populations are enrolled in traditional Medicaid.  Specific populations include pregnant women, individuals on Medicare and Medicaid (dually-eligible), terminally ill hospice patients, beneficiaries qualifying for long-term care services and supports, medically frail and special medical needs individuals, Temporary Assistance for Needy Families and section 1931 (determining eligibility for individuals to be on welfare) as well as some children who are in foster care or are adopted.

Summary of benefits and coverage

Individuals need to check to see whether their medical equipment and supplies are adequately covered under the rehabilitative and habilitative services and devices benefit within the EHB package. Click this link to see each state's list of state required benefits, summary of benefits along with a guide to reviewing each states' essential health benefits plans. Check to see that you are getting the right benefits and services for your needs


Employer Mandate in the Affordable Care Act

Under the employer mandate, employers with at least 50 full-time workers must provide affordable health coverage or face a $2,000 fine per worker after the first 30 employees. The employer mandate will be delayed for one year -- until 2015 -- to address employers' and business groups' concerns and to give them more time to comply with the reporting requirements. The employer mandate has been delayed for one year until January 1, 2015.


Individual Mandate in the Affordable Care Act
All individuals must carry some form of health insurance coverage or pay a tax through state healthcare marketplaces or subsidies.

If individuals choose not to carry insurance, they are subject to a penalty, starting at $95 per person per year or 1 percent of income in 2014, whichever is greater, and eventually reaching $695 per person or 2.5 percent of income by 2016. The individual mandate begins January 2014.


State Children's Health Insurance Program (SCHIP)

State Children's Health Insurance Program (SCHIP) or Children's Health Insurance Program (CHIP), signed into law in 1997, is a program administered by the United States Department of Health and Human Services that provides matching funds to states for health insurance to families with children. The program covers nearly 8 million children in families with incomes that are too high to qualify for Medicaid but cannot afford private coverage.

What about the Affordable Care Act and CHIP?
The Affordable Care Act of 2010 maintains the CHIP eligibility standards in place as of enactment through 2019. The law extends CHIP funding until October 1, 2015, when the CHIP federal matching rate will be increased by 23%, bringing the average federal matching rate for CHIP to 93%. The Affordable Care Act also provided an additional $40 million in federal funding to continue efforts to promote enrollment in Medicaid and CHIP.


Consumer Questions and Helpful Resources


State Health Insurance Assistance Program (SHIP)


  • Residents of nursing homes, board and care homes and assisted living facilities can contact a long-term care ombudsman program located in every state, the District of Columbia and Puerto Rico.

 Learn more information about the new law at Health Care.Gov


[1] Children's Health Insurance Program – medical coverage of pregnant women and their infants.  CHIP provides low-cost insurance to women and newborns whose family is not eligible for Medicaid.

[2] Self-insured group health plans, health insurance coverage offered in the large group market, and grandfathered health plans are not required to cover the essential health benefits.


1.8. Health Insurance Marketplace

As we near the date when the Affordable Care Act will be fully implemented, it is important to understand that health insurance is changing in important ways in 2014. HealthCare.gov has been updated to help you get ready for those changes with the opening of the new Health Insurance Marketplace or call 1-800-318-2596.  This site/phone will answer your questions about health insurance coverage, explain your rights and help you find insurance coverage that is right for you and your family.

1.9. Health Care Reform - Update April 2011

On March 23, 2011, "The Patient Protection and Affordable Care Act" (P.L. 111-148/152) celebrated its first anniversary and there remains significant confusion among those with disabilities about the law, including concerns as to whether it even still exists. In honor of this milestone in the life of this landmark legislation so important to those with disabilities and chronic illnesses and more than 32 million uninsured Americans, the United Spinal Association is taking this opportunity to compile answers to the most often heard queries we have received from our members and others about the law, which also is widely referred to as the "Affordable Care Act" (ACA) or the health reform law ......"


1.10. Pre-existing condition

As previously announced, benefits coverage for current enrollees in the federally-run and state-based Pre-Existing Condition Insurance Plan (PCIP) will end on April 30, 2014. PCIP benefits will not be extended to May. This temporary program, created by the Affordable Care Act, was originally scheduled to end on December 31, 2013. We have been able to extend benefits coverage to enrollees for an additional four months in 2014, to help ensure they did not experience a break in health coverage as they transitioned to other coverage through the Health Insurance Marketplace. Enrollees who do not have other coverage that begins May 1, 2014, will be eligible for a 60-day special enrollment period that will begin on May 1, 2014, to enroll in new coverage through the Marketplace. You will receive a letter by mail shortly that explains the next steps. For now, you should know that no matter when you enroll in other coverage through the Marketplace during the 60-day special enrollment period, your new coverage will still be effective back to May 1. This way, you avoid a break in your health coverage.

Currently, those with were previously not covered due to a pre-existing condition, who are now also covered by a health plan, are automatically covered.


1.11. Impact of Health Care Reform on Disabilities

Impact of Health Care Reform on Disabilities  

The disability community has worked together tirelessly for more than a year to achieve health care reform.   After health care reform nearly died several times, Congress revived it and it became law in March 2010.  From any perspective, the final legislation is not perfect, but it will bring important improvements in health care coverage for people with spinal cord injuries and disorders and people with disabilities in general.  This link summarizes major final health care reform provisions that particularly impact people with disabilities.  Please note that this list is by no means exhaustive



2. Insurance Guide

2.1. What You Should Know About Health Insurance.

What You Should Know About Health Insurance.

Guidelines for Persons with a Spinal Cord Injury.

Knowledge is power; it enables you to become more effective in daily living! Become an educated consumer of health insurance and your own best advocate. This information is compiled for persons with spinal cord injuries/diseases (SCI/D) and other disabilities and their families. It gives a basic overview of information that an individual needs to know to become a more enlightened consumer of health insurance. For people with SCI/D, achieving and maintaining optimal health and preventing secondary conditions is vital. Access to quality healthcare often requires an understanding of the following topics, all included on this website:

  • Understanding your rights as a health consumer
  • Guidelines for selecting an insurance policy and understanding its provisions
  • Steps to negotiate the insurance maze
  • Frequently asked questions
  • General guidelines for the appeals process (if your claim is denied)
  • Suggestions if you have been unable to obtain health insurance
  • Appendices of Helpful Resources
    1. Where to find your State Insurance Commissioner
    2. Where to find information about changing Federal and State laws that affect health insurance coveragec.
    3. Booklets, offices pertaining to health insurance.

As with any information dealing with this subject, it is impossible to include and address all concerns one may have about health insurance. This website is not intended to cover every situation or every nuance of insurance law. Highly technical questions that you may have should be directed to your insurance agent, personnel specialist, or your own lawyer. Hopefully, you will gain the basic knowledge that you need to exercise your rights regarding health insurance and your own plan.

by Charleene R. Frazier, R.N., M.S.
NSCIA Resource Center Associate, SCI Nurse Consultant

National Spinal Cord Injury Association wishes to thank Medtronic, Inc., who has generously provided a grant to underwrite the costs of the development of these guidelines and for their commitment to persons with spinal cord injury.

NSCIA acknowledges, with appreciation, the contributions of Bernadette and Robert Mauro in the early stages of the development of these guidelines.

2.2. Consumer Rights

As a person living with SCI, it is important that you exercise your rights to:

  • Maintain and improve your own health and that of your own family and community

  • Access information that enables you to make knowledgeable choices for your health practices including:

    1. Choose your doctor
    2. Choose suitable and appropriate health insurance

      • Understand types of health insurances
      • Know what services and conditions are included, excluded, limited
      • Know steps to assure your ability to have rights and needs met

    3. Make selections to foster a healthy lifestyle that include:

      • Quality care choices that promote disease prevention and reduce risk of secondary conditions, provide interactive checkups, support your caregiver needs
      • How to recognize quack providers and scam practices [see appendices]
      • Mechanisms and processes for reporting product and provider complaints

  • Achieve a relationship, as a person with SCI/D, of mutual understanding with your insurance company supported by:

    1. Copy of your insurance company's booklet of a full and detailed explanation of benefits
    2. Designated claims advisor, benefits provider, or case manager as your representative within the insurance company; this person should understand your particular needs, become an advocate for you and be the person with whom you will interact whenever you have an insurance issue.
    3. Opportunity to educate your designated insurance representative about the health care needs of the person with a SCI/D. (Teach this person the risk factors for the secondary complications of spinal cord injury, necessary measures to preserve the health and integrity of your paralyzed body and importance of immediate access to insurance and health care professionals)

Educate your insurance representative to be an advocate for your health care needs

2.3. Forms of Insurance

Since 1992, there has been a strong move to contain the spiraling costs of health care. Today, health insurance is offered in three major formats:

  • Third Party Payors,
  • Health Maintenance Organization (HMO), and
  • Preferred Provider and Point of Service Organizations (PPO/POS)

There are three government-funded health insurance plans that it is important for the person with a SCI/D to know and understand:

  • Medicare
  • Medicaid
  • Social Security Disability Insurance (SSDI)


Major Health Insurance Formats

  • Third Party Payors - Insurance companies or organizations that sell commercial insurance to employers, process claims, and pay providers. There are two categories:

    1. "Fee for service" (traditional kind of health care policy) pays providers a fee for the services provided to the insured; offers consumers the most choices of doctors and hospitals. In most cases, the insurance covers 80% of the charge and the patient pays the remaining 20% coinsurance.

    2. Managed Care Organization (MCO) – A payor organizes a group of providers, called a network, who have agreed to provide specified health services to persons who enroll in the MCO plan. The network providers are paid according to a predetermined, contracted rate. (Because of lower costs to employers, MCOs have almost entirely replaced the indemnity "fee for service" plans in the U.S.)

  • Health Maintenance Organization (HMO) These are prepaid health plans for which there are several existing models; the major differences in the models exist in the relationship between the HMO and the participating physicians. You or the insured, the HMO member, pay(s) a monthly premium.

    In exchange, the HMO provides comprehensive care for you and your family, including doctors' visits, hospital stays, emergency care, surgery, lab tests, x-rays, and therapy. The HMO arranges for this care; usually, your choices of doctors and hospitals are limited. However, exceptions are made in emergencies or when medically necessary.

  • Preferred Provider and Point of Service Organizations (PPO/POS) These are mixed model plans that blend a combination of MCO and HMO features. A PPO, similar to an HMO, has a limited number of doctors and hospitals from which to choose and requires that you choose a primary care doctor to monitor your health care.

    A POS offers a broader selection of providers; the insured selects the provider of choice when the medical services are needed. When you use PPO/POS providers (sometimes called "preferred" providers, other times called"network" providers), most of your medical bills are covered.

    Usually there is a small co-payment for each visit; for some services, you may have to pay a deductible and a co-payment. If you choose (a) provider(s) outside of the network, coverage payment may be less and you may pay a larger deductible or co-payment. Covered services most often included preventive care such as visits to the doctor, well-baby care, immunizations, and mammograms.

Government-Funded Health Insurance Plans

There are three government-funded health insurance plans that it is important for the person with a SCI/D to know and understand:

  • Medicare 1 a federal health insurance program for persons who are disabled and have received Social Security Disability Insurance (SSDI) for at least 24 months, and for persons 65 years of age or older. Medicare has two parts; these do not cover the same things:

    1. Part A covers inpatient hospitalization, skilled nursing facility care, and hospice care. It will pay for some home health care services, however, you must need skilled care and be homebound. Most people don't have to pay premiums for Part A coverage, but you will have deductibles to pay.

    2. Part B covers inpatient and outpatient physician services, as well as outpatient therapies, limited medical supplies and medical tests, and some durable medical equipment (DME). (DMEs require a Certificate of Medical Necessity (CMN) submitted by your physician) Part B is optional, requires a monthly premium, an annual deductible, a copayment for each visit or service.

  • Medicaid is a federal program that is administered by the states. It provides medical assistance for persons with low-income and limited assets. Medicaid covers inpatient and outpatient hospital care, physician services, home health care services, medications, and some supplies.

  • Social Security Disability Insurance (SSDI) [www.ssa.gov/applyforbenefits] is for one who is permanently disabled; eligibility is based on one's prior work history under Social Security and determined by the Social Security Administration.

    1. If you are permanently disabled and have been receiving SSDI benefits for 24 months, you will then be automatically enrolled in Medicare

    2. Please note: SSI is not an insurance program. SSI disability payments are made on the basis of financial need. SSI recipients are automatically enrolled in Medicaid, i.e. State Medical Assistance. There are several differences in the eligibility rules for SSI and SSDI.2

Inquire about your eligibility for Medicare/Medicaid as soon as possible following your injury. If you are still in acute rehabilitation, seek the assistance of your social worker or discharge planner. Begin the application process immediately. The approval process is lengthy; periodic inquiries to determine status of the application is appropriate and encouraged.

1 Understanding the Benefits, p. 24. Social Security Administration, Publication No. 05- 10024, January 2000
2 Disability Benefits, p. 1. Social Security Administration, Publication No. 05-10029, September 1999

2.4. Selecting a Policy

Guidelines for Selecting a Health Insurance Policy

Insurance companies are businesses; their goal is to make money. Your responsibility is to be an educated, informed consumer who is able to make appropriate selections for your health insurance coverage. The National Committee of Quality Assurance, a non-profit organization has developed a "Health Plan Report Card" that can assist you in your decision.1 You may obtain a consumer guide for your state (online resource only) at http://www.healthinsuranceinfo.net/.

Insurance companies are regulated by each of the states in which they do business. Generally, a State Insurance Commission oversees these regulations. However, self-insured plans are not regulated by the state; the federal law known as ERISA or Employees Retirement and Income Security Act regulates them. The employer of the insured runs self-insured health plans. It is important to know if your employment-derived health insurance coverage is a 'self-insured' plan. This will be useful and important information when negotiating with your insurance company for disability-related coverage.

1 Health Plan Report Card. National Committee for Quality Assurance. or 1-888-275-7585

Personal Considerations, Questions to Ask, and Insurance Definitions are important contributors to your selection process: (Considering your own circumstances, use these sections to identify and prioritize your needs and health goals)

List your personal considerations:

  • What are your health practices that promote your health and well-being as a person with a SCI/D

  • Do you have any existing chronic conditions in addition to your SCI/D

  • What specialists provide your care, i.e. physiatrist, urologist, cardiologist (list your doctors, the hospital(s) at which they have admitting privileges and the plans in which they participate)

  • How often is it necessary for you to be seen by each specialist

  • What rehabilitation therapies do you need and how frequently, such as physical or occupational therapy

  • Do you need personal assistant services; if so, how many hours daily or weekly

  • What durable medical equipment, rehabilitative, assistive and adaptive devices do you require for accessibility and independent functioning

  • Do you live near your needed health services (What is your hospital preference)

  • How do you get to the doctor, urgent care center or hospital, when needed

  • Is your health insurance only for yourself or do you have beneficiaries

  • Are you employed or is seeking employment within your goals

Knowledge of lifetime caps on health insurance benefits is important information for persons living with SCI.

Questions to ask about a health insurance plan:

  • What kind of policy is this, i.e. read the description of the policy

  • Can I choose or retain a specialist (e.g. physiatrist) as my primary care physician (PCP)

  • Is there coverage for specialists including those with SCI expertise

  • Does the plan provide out-of- network referrals or standing referrals to specialists or specialty care centers

  • Are physicians' offices and related health facilities accessible

  • What services are and are not covered (i.e. its inclusions, limitations and exclusions): inpatient and outpatient rehabilitation, home health assistance, mental health care, medical transportation (This information is often in obscure places within a policy such as within definitions)

  • What are the policies regarding deductibles, co-payments, prescription and durable medical equipment coverage, long-term, community-based services

  • Are there case management services for people with SCI/D

  • Does the plan offer a help line or advice line for assistance; if so, who staffs this line

  • What are the requirements for pre-certification or authorization for preventive, routine, elective, urgent and emergency care

  • Does the plan have lifetime caps, i.e. a maximum amount of dollars that will be paid for a condition or for particular services such as rehabilitation, personal assistance or equipment needs

  • Is there a clearly explained process for you to file a complaint; are you eligible to receive reimbursement when seeking a second opinion, if and when you believe you are not receiving necessary and/or appropriate services

Understanding Insurance Definitions before Selecting a Health Insurance Plan:

  • Premium – a periodic payment (usually monthly) made to a payor (insurance company) to keep an insurance policy active; must be paid before, and whether or not, any services are actually received.

  • Deductible - an annual, out-of-pocket amount, fixed by the individual insurance policy, that the insured must pay each year before the company will begin payment for covered benefits. (If there is a deductible, you should know how much it is, if it is for the entire family or does each member of the family have to satisfy the specified deductible before the plan pays individual benefits)

  • Co-payment – a fixed amount that is required every time you use your health plan for service(s) and pharmacy prescriptions.

  • Co-insurance – a percentage of a health care service fee that must be paid by the patient; a person's second insurance program (secondary) may pay all or a portion of this amount.

  • Basic medical services - well care visits

  • Major medical plan – may include such services as dental, pharmacy, mental health, vision care

  • Pre-existing condition – an illness, disability, or disease that the insured has incurred before coverage has commenced. The passage of the Health Insurance Portability and Accountability Act of 1996 (HIPAA) has prohibited the exclusion of individuals from coverage in health insurance plans due to pre-existing conditions.

  • Network - physicians, auxiliary services, and hospitals with which an HMO contracts to provide care to its clients.

  • Out-of-network: physicians, auxiliary services, and hospitals that are not associated with a particular plan or organization. Depending on the plan, consumers who select out-of-network services may have to pay a higher cost or the entire cost of going out-of-network. Exceptions are usually made when members of the plan are traveling out of range of the service provider network.

  • Lifetime cap (Important knowledge for a person with a SCI/D)– Maximum amount that a plan will pay for a given condition (usually $1,000,000)

    1. Inquire if a higher cap is available and the cost of this addition to the policy
    2. In self-insured plans, the employer can set different lifetime caps for different medical conditions

  • Medically necessary services - must comply with the terms of the insurance contract (policy); cannot be experimental, non-FDA approved, educational, or investigative in nature
Knowledge of lifetime caps on health insurance benefits is important information
for persons living with SCI

2.5. Insurance Maze

Recommended Steps:

  • Obtain a copy of the full (not abbreviated or summarized) explanation of insurance benefits. Read your policy carefully and thoroughly, including fine print, definitions, exclusions, etc.

  • Find out if you have been assigned a case manager and contact that individual; if not, request that you be assigned to a case manager or benefits advisor. To be your own best advocate, you should educate this individual about your SCI/D and your particular needs to preserve the integrity of your body and health.

  • Determine the rehabilitation benefits: inquire about the number of allowed days of coverage for inpatient acute and sub-acute rehabilitation, outpatient and home health rehabilitation; is there an annual maximum number of days; is there a lifetime maximum number of days (these need to be differentiated according to the above categories of service)

  • Inquire about rehabilitation in a SCI/D-accredited rehabilitation facility; does this include both an in-state or out-of-state facility

  • Know the benefits re: durable medical equipment (DME); is there a lifetime maximum amount of dollars for DME

  • Select a doctor: Your choice will depend upon the type of insurance plan that you have. You will need a doctor with expertise in SCI/D; can this person be your primary care physician (PCP) or will your PCP consult with your SCI/D doctor in the management of your health care? The following will apply:

    1. HMO: must use a physician who is part of the HMO
    2. PPO or POS: Choose a doctor within the system; if your doctor is not on the given list, you may choose to go out of network; you will probably have to pay all or a larger portion of the fees

  • Contact your insurance representative for issues and/or concerns that relate to your health insurance and whenever you have been denied a service that you believe to be covered

  • Remember to always document/record all conversations with your insurance company: include date of the call, the reason for the call, the person with whom you spoke and the outcome of the call.

  • Keep all correspondence that has anything to do with your health insurance coverage! All written communications should include your Name, Insurance Identification (ID) and/or Group Number, Social Security Number and your date of birth; require that all actions regarding health benefits coverage be in writing.

Frequently Asked Questions

Can I go to a doctor with SCI/D expertise?
Consult the provisions of your insurance policy; if your PCP does not have this knowledge, ask him/her to consult with a SCI/D physician in the management of your health care
Can I continue my health insurance that I had through my employment, even though I cannot return to that place of employment?
COBRA, the Consolidated Omnibus Budget Reconciliation Act of 1986, is a federal law that gives certain employees and dependents the right to "continuation coverage." This means that they can temporarily continue to keep the same coverage they had through a group health plan, even after they are no longer entitled to stay in the group health plan. The benefits will be the same, but the premiums will probably be higher. COBRA continuation coverage is only available when coverage is lost due to certain qualifying events, such as losing a job, death, divorce, or other life events. Under certain circumstances for the person with SCI/D, this continuation may be extended an additional 11 months beyond the initial continuation.
What is durable medical equipment (DME)?
Equipment such as wheelchairs, walkers, commode and shower chairs that must be ordered by your doctor, accompanied by a 'certificate of medical necessity' (CMN), for long term use, and for use in the home.
Who is responsible for a 'certificate of medical necessity'?
Your physician must complete and sign, in his/her own handwriting, a CMN. This form should accompany any DME request to your insurance company or Medicare; it should specify that your diagnosis is permanent, that the requested item will be used over time and that it contributes to your health by preserving the integrity of your paralyzed muscles, wellbeing and/or functional independence.
Will my insurance pay for experimental or research procedures?
For possible consideration for access to and coverage for experimental medications or procedures: Ask the plan administrator for a "Compassionate Use Waiver" from the FDA. If the waiver is granted, the health insurance plan may permit access and coverage 13
What can I expect if I become acutely ill?
Prior to an acute illness, you should request a consultation appointment with your PCP during which you discuss your immediate needs regarding urinary tract infections (UTI's), spasticity, autonomic dysreflexia (AD), pressure sores and other possible urgent health care needs. Ask about "standing referrals" to a specialist such as an urologist, procedures and policies when you become ill after office hours and/or have an urgent care or emergency need.
What should I do if I am too ill and weak to wait for care in an emergency waiting room?
Call your health insurance provider advice or hotline. Ask that they make arrangements for you to be seen, or at least placed, in an emergency patient room as soon as you arrive at the ER or arrange for your doctor's office nurse/staff to assist with such arrangements or contact your hospital trauma or SCI nurse specialist and ask for this assistance
What should I do if I require urgent or emergency care?
Call your PCP or insurance advice/hotline if your situation is non-life threatening. If your situation is life threatening, go immediately to the nearest ER; take your insurance card with you; take information about AD and any allergies, if these are risk(s) for you. Following your emergency, immediately contact your health insurance case manager.

Guidelines When a Health Service or an Insurance Claim is Rejected or Denied

All health insurance plans have some form of appeals procedure. It is not unusual for medical procedures, medications, therapies, 'length of stay' days and durable medical equipment to be denied to individuals covered by healthcare plans. Over 70% of those persons, who have been denied coverage, do not attempt to appeal the decision. It is strongly recommended that you should appeal all denied or rejected insurance decisions or claims. Decisions are reversed in 43% to 80% of cases that are appealed, according to recent reports.

Recommended steps:

  • Contact your insurance representative immediately; ask for an explanation of the action
    1. If needed information was not provided with the original request, resubmit your request with the pertinent or necessary information.
    2. If the action is a denial, request the reason(s) for each denial in writing

  • Read your policy carefully:
    1. To discover which type of dispute resolution mechanism (appeals process) is available to you
    2. To determine if your insurance carrier has mistakenly denied coverage 14
    3. To determine if the service, that has been denied, is deemed "medically necessary"

  • Document/Record all conversations:
    1. Include name, date, time and actions, of anyone related to the problem/issue, with whom you have spoken
    2. Keep copies of all correspondence that has anything to do with the initial denial of coverage, and anything that pertains to your appeal
    3. Keep copies of all claim forms and bills

  • Submitting an appeal: Be your own best advocate!
    1. Be familiar with appeals procedures
    2. Know deadlines to file claims and appeals
    3. Inquire as to when a hearing will be scheduled. (Most plans have a maximum number of days in which to set a hearing date.) Make repeat phone calls until you get concrete answers to your questions. Be insistent, consistent and persistent!
    4. Base the contents of your appeal in relation to the reason for the denial:

      • Learn and be informed about your own health impairment, level of injury, care required to preserve the integrity of your paralyzed body, risk of secondary complications.
      • Enlist the cooperation and collaboration of your doctor in providing supporting documentation as to the need for a reversal of action
      • Submit supporting statements from experts in the field with your appeal
      • Submit published articles that substantiate the necessity of the service or durable medical equipment that was denied with your appeal

Be your own best advocate - when uncertain or dissatisfied – Appeal!

  • Should you feel that you have not been treated fairly by your plan provider or that the appeals process has become too lengthy, contact your state Insurance Commissioner. Each state has an agency whose sole responsibility is to regulate the insurance industry within that state. No two states have exactly the same insurance regulations; you must contact your state insurance agency to learn your rights about the appeals process.
  • Health Insurance Ombudsman: Twenty states now have these government-paid intermediaries to help the consumer navigate the health care system and resolve health insurance problems. Contact your state insurance agency to find out if this is a service offered within your state.

2.6. Are You Uninsured?

Resources for the Uninsured SCI/D Person

The lack of health insurance has become a serious concern within the U.S. An analysis of the 2000 census reports revealed that 81% or 13 million Americans have incomes too high to qualify for State Medicaid. Studies reveal that the uninsured person accesses health care less frequently, has more untreated medical problems, are less likely to receive preventive care and more likely to be hospitalized for preventable medical conditions. 1

Avoid secondary complications – Seek medical care

Access to appropriate health care is very important for the person with SCI. The aboveidentified problems can be direct contributors to intensifying the risk for secondary complications that are consistent with SCI. It will be particularly important that you become an advocate for yourself in a persistent effort to obtain the medical care that is vital to preserving the integrity of your paralyzed body and achieving a good quality of health.

There are charitable and patient assistance programs for which you may be eligible. Several of the prescription assistance programs include pharmaceutical companies that produce some of the medications commonly used for SCI persons. Each pharmaceutical company has its own application form that must be obtained, filled out and submitted by your physician. To be considered for all assistance programs, you should be prepared to:

  • Show proof of no insurance coverage
  • Show proof of no prescription coverage
  • Provide detailed financial information
  • Demonstrate being under the care of a licensed physician

The following resources may provide assistance:

  • Community Free Clinics: HRSA - Find a Health Center - Search Page (Toll-free (877) 464-4772, Monday through Friday (except Federal holidays), 9 am to 5:30 pm ET.) for list of network of clinics or call your local Department of Health and Social Services to locate a free clinic in your community

  • Charity Doctors: Call local Department of Health and Social Services or County Medical Society for a list of names

  • Community Health Centers: County or city health departments: State or local listing in telephone directory; may offer subsidized or free programs for residents of a particular geographic area

  • Easter Seals : Ph: 1-800-221-6827 to locate your state office

  • Prescription Assistance Programs:
  • Catholic Charities:
    local listing in telephone directory

  • Shriners Hospitals for Children:
    Ph: 1-800-237-5055 * Contact any Shrine Club

  • University Medical Centers:
    State or local listing in telephone directory; inquire about research protocols, 'sliding fee' programs

  • Rural Assistance Center:
    E-mail: info@raconline.org Ph: 1-800-270-1898 – has database of information, including funding resources and other needs for special populations

  • Vocational Rehabilitation:
    Phone Numbers for State Vocational Rehab Services listed at or go to State Government listing (Blue pages) in telephone directory – If your long range goals include returning to gainful employment, this can be an entry-way to resources for health care

1 Fact Sheet re: Uninsured. Families. USA, May 2001
1 Millions of Low Income Left Uninsured. Health Care Safety Net, July 19, 2001

3. Health insurance

4. Helpful Insurance Resources

4.1. Insurance Appeals

Engaging with Insurers: Appealing a Denial
Publication of the Patient Advocate Foundation that generally addresses insurance denials and appeals processes. 

6 Strategies to Navigate Your Insurance Provider’s Approvals Process – New Mobility, July 2021 
This New Mobility article describes some consumer approaches to durable medical equipment (DME) insurance denials. 

4.2. Intermittent Catheter Coverage-Medicare


Intermittent catheterization is covered when basic coverage criteria are met and the beneficiary or caregiver can perform the procedure.

For each episode of covered catheterization, Medicare will cover:

One catheter (A4351, A4352) and an individual packet of lubricant (A4332); orOne sterile intermittent catheter kit (A4353) if additional coverage criteria (see below) are met.Intermittent catheterization using a sterile intermittent catheter kit (A4353) is covered when the beneficiary requires catheterization and the beneficiary meets one of the following criteria (1-5):

  1. The beneficiary resides in a nursing facility,

    2. The beneficiary is immunosuppressed, for example (not all-inclusive):

  • on a regimen of immunosuppressive drugs post-transplant,
  • on cancer chemotherapy,
  • has AIDS,
  • has a drug-induced state such as chronic oral corticosteroid use.

    3. The beneficiary has radiologically documented vesico-ureteral reflux while on a program of intermittent catheterization,

    4. The beneficiary is a spinal cord injured female with neurogenic bladder who is pregnant (for duration of pregnancy only),

    5. The beneficiary has had distinct, recurrent urinary tract infections, while on a program of sterile intermittent catheterization with A4351/A4352 and sterile lubricant A4332, twice within the 12-month prior to the initiation of sterile intermittent catheter kits.

  1. A beneficiary would be considered to have a urinary tract infection if they have a urine culture with greater than 10,000 colony forming units of a urinary pathogen AND concurrent presence of one or more of the following signs, symptoms or laboratory findings:

  • Fever (oral temperature greater than 38º C [100.4º F])
  • Systemic leukocytosis
  • Change in urinary urgency, frequency, or incontinence
  • Appearance of new or increase in autonomic dysreflexia (sweating, bradycardia, blood pressure elevation)
  • Physical signs of prostatitis, epididymitis, orchitis
  • Increased muscle spasms
  • Pyuria (greater than 5 white blood cells [WBCs] per high-powered field)

    Usual Maximum Quantity of SuppliesCode


Number per Month









Refer to Coding Guidelines section of the related Policy Article for contents of the kit (A4353). A4353 should not be used for billing if the components are packaged separately rather than together as a kit. Separately provided components do not provide the equivalent degree of sterility achieved with an A4353. If separate components are provided instead of a kit (A4353) they will be denied as not reasonable and necessary.

Use of a Coude (curved) tip catheter (A4352) in female beneficiaries is rarely reasonable and necessary. When a Coude tip catheter is used (either male or female beneficiaries), there must be documentation in the beneficiary's medical record of the medical necessity for that catheter. An example would be the inability to catheterize with a straight tip catheter. This documentation must be available upon request. If documentation is requested and does not substantiate medical necessity, claims will be denied as not reasonable and necessary.

4.3. The Blameless Victim-Non-Fiction Book

Harold Rhodes' diary, The Blameless Victim documents his and his family's trials and tribulations after his wife Marcia was catastrophically injured in an automobile accident.  

"In January 2002, a massive tanker-trailer hit Marcia Rhodes' car from behind, and she suffered a welter of crippling injuries, including irreparable spinal cord damage that left her a paraplegic. Her husband, Harold, in this debut memoir, walks readers through their harrowing story, including the protracted aftermath of Marcia's medical struggles, and the couple's fight with two insurance companies that were reluctant to reach financial settlements. As the book's subtitle suggests, the author focuses on their tug-of war with these companies, and their indefatigable efforts to compel them to pay what they desperately needed to cover onerous medical costs. Rhodes' depiction of insurance carriers' cynical

money-saving strategies serves as a grim reminder of how toxic the mix of commerce and health care can be. He also illustrates, with painstaking thoroughness, the judicial system's lamentable limitations and the ballooning costs of health care.

Additionally, the couple had to contend with a criminal trial against the driver of the truck, who was charged with negligence. Still, the heart of the book concerns the couple's battle to manage the emotional fallout of a transformative disaster. For example, after the author asked his wife to politely thank him for his caregiving efforts, he realized the depths of her depression: "She felt that given the way her life was, I was not being reasonable to have these expectations. She was utterly depressed, so just getting through the day was all I could expect. She was perfectly correct. I am not supposed to nag her; I am supposed to love her as she is." The account of the legal contests can be excruciatingly

detailed, and the book's overall, chronological structure."


                                                                                                                Kirkus Reviews...

4.4. Consumer Health Insurance Guide

The Georgetown University Health Policy Institute has written A CONSUMER GUIDE FOR GETTING AND KEEPING HEALTH INSURANCE for each state and the District of Columbia - fifty-one in all. These Consumer Guides are available at this web site and will be updated periodically as changes in federal and state policy warrant.

4.5. Guidance for Finding Health Insurance

HealthCare.gov - this federal site will help you beome your own best advocate for finding and using health insurance.  The site provides information about current health laws, enables you to access and compare insurance plans, offers consumer insurance assistance in your state, has a tool for comparing health care providers and tips on health prevention and wellness. Available en espanol

4.6. ACA/ Health Insurance Marketplace website and Call Center


ACA/ Health Insurance Marketplace website and Call Center www.healthcare.gov; Spanish website https://www.cuidadodesalud.gov/es ; Call center customer service toll-free number is 1-800-318-2596; TTY/TDD number is 1-855-889-4325. Call center provides assistance in more than 150 languages.  Call center is available 24 hours a day. 

4.7. Find Insurance Options

See which public, private and community programs meet your needs

This tool will help you find the health insurance best suited to your needs, whether it's private insurance for individuals, families, and small businesses, or public programs that may work for you. It was created to help consumers under the health insurance reform law, the Affordable Care Act.

4.8. Insure Kids Now

Insure Kids Now

Your child or teen may qualify for no-cost or low-cost health insurance coverage through Medicaid and the Children's Health Insurance Program (CHIP). Many parents may also be eligible.

If you or someone in your family needs health coverage, you should apply. To find information about Medicaid and CHIP health coverage programs in your state, go to Programs in Your State or call 1-877-Kids-Now (1-877-543-7669).

4.9. Patient Advocate Foundation

Patient Advocate Foundation seeks to empower patients to take control of their health care. Case managers work with patients to discover local, state, and federal programs that provide assistance for their individual needs. If you or someone you know needs assistance with their insurer, employer and/or creditor regarding insurance, job retention and/or debt crisis matters relative to their diagnosis of life threatening or debilitating diseases, please call 1-800-532-5274 or email: help@patientadvocate.org