Government Benefits and Insurance

The U.S. government provides benefits and care coverage to those in need. On this page we outline some programs that may help people living with Parkinson's disease. Remember to keep any potentially relevant paperwork you receive from an employer, an insurer, a government agency or an advocate on your behalf and to keep copies of everything that you submit.

 

Social Security

In addition to traditional retirement benefits, the Social Security Administration (SSA) also provides benefits to qualifying individuals with disabilities. Visit the Benefit Eligibility Screening Tool (BEST) and the Disability Planner to see if you or a loved one qualify for SSA disability programs.

Social Security Disability Insurance (SSDI)

If you live with Parkinson's disease, are below 65 years of age and are unable to work due to your Parkinson's disease and/or other condition, you might be entitled to SSDI benefits. These are income supplements for people whose employment is limited due to a disability. Read more about SSDI or call 1-800-772-1213 to learn more.

It can take a few months for SSDI to kick in. During that period, applicants may be eligible for Supplemental Security Income (SSI) benefits from the government.

SSDI beneficiaries are automatically eligible for Medicare after collecting SSDI benefits for 24 months. They may also be eligible for Medicaid but must submit a separate Medicaid application. See below for more information on those programs. For further information, read the Social Security guide to Medicare.

Supplemental Security Income (SSI)

SSI provides a monthly cash stipend to people with disabilities who need help meeting their basic needs for shelter, food and clothing. It differs from SSDI in that it is based on financial need only. Read more about SSI or call 1-800-772-1213 to learn more.

People diagnosed with multiple system atrophy, a type of parkinsonism, may qualify for a fast-tracked application under the compassionate allowances condition initiative, which is reserved for applicants whose medical conditions almost always meet Social Security's disability standards.

Revised Rules for Determining Eligibility

Beginning September 29, 2016, the Social Security Administration (SSA) will be using new criteria to evaluate Parkinson's disease for disability insurance. This marks the first time the SSA has incorporated the non-motor aspects of Parkinson's disease, such as cognitive functioning, into its criteria for evaluating SSDI applications.

View comments from the SSA about the new rules and read MJFF's blog on the topic.

Medicare

Medicare provides health care services for people 65 and older and people younger than age 65 with disabilities. There are several components to Medicare:

Each state has a State Health Insurance Assistance Program to help Medicare beneficiaries find the most appropriate insurance options.

Medicare Therapy Caps

The Balanced Budget Act of 1997 created limits, or caps, on the amount of outpatient physical, occupational and speech-language therapy a Medicare beneficiary can receive each calendar year. There is currently a combined $1,940 yearly cap for physical therapy and speech-language therapy, and a separate $1,940 yearly cap for occupational therapy. Once those amounts are reached, beneficiaries who require additional services in the calendar year are responsible for 100 percent of the cost. In addition to the caps, a manual medical review is required once a beneficiary hits $3,700 in therapy services.

To mitigate the impact of these caps, Congress created an exceptions process for services deemed medically necessary. If care continues to be medically necessary beyond the $1,940 cap, ask your therapist to:

The exceptions process is temporary and must be reauthorized by Congress every year. It is set to expire on December 31, 2017.

Medicare Improvement Standard

Up until 2013, the "improvement standard" was an inaccurate policy being arbitrarily applied by Medicare providers, contractors and adjudicators that required beneficiaries to show improvement to continue receiving physical, occupational and speech-language therapy. For people with chronic degenerative conditions like Parkinson's, therapy is not intended to result in improvement; it's used to help maintain function and increase quality of life. Therefore, people with PD could be denied therapy services under this inaccurate "improvement standard."

The "improvement standard" was challenged by several patients and advocacy groups, including the former Parkinson's Action Network, in the case of Jimmo v. Sebelius. The parties reached a settlement in January 2013 declaring Medicare beneficiaries cannot be denied coverage for physical, occupational and speech-language therapy, as well as other select services (including skilled nursing facilities, inpatient rehabilitation facilities and home health), solely for lack of improvement. The Centers for Medicare and Medicaid Services (CMS), which administers the Medicare program, was given one year to update its policy manual and execute a nationwide education campaign for all who make Medicare determinations. Unfortunately, while the policy manual has been updated, confusion remains and people are still being denied coverage. In Spring 2016, the parties returned to court to pursue further legal action to ensure the Jimmo settlement is fully and accurately implemented.

In February 2017, the court ordered CMS to execute a "corrective action plan" to ensure beneficiaries are no longer being denied coverage due to the "improvement standard." The plan includes:

The corrective action plan must be complete and implemented by September 4, 2017.

Medicaid

Medicaid is a joint federal-state program that provides health care services primarily to low-income individuals. Among those potentially eligible for coverage are people with disabilities and those who receive federally assisted income maintenance payments, such as Supplemental Security Income (read more on that program above). Because state governments contribute a substantial amount of funds to Medicaid, benefits vary widely around the country. Nearly all programs help pay for prescription drugs.

For more information,visit the Medicaid website or find contact information for the Medicaid office in your area .

Consolidated Omnibus Budget Reconciliation Act (COBRA)

The Consolidated Omnibus Budget Reconciliation Act (COBRA) stipulates that when an employee loses health care coverage under an employer-sponsored plan, he or she can elect to continue coverage under that plan for a set period of time on a self-pay basis. COBRA applies most frequently in instances when an employee is laid off (for reasons other than "gross misconduct") or his or her hours are reduced. The law also applies to the employee's dependents in the event of divorce, the employee's death or other situations.

Generally, employers are required to offer access to their health care plan for 18 months after the employee is terminated or his or her hours are reduced. That period is extended to 29 months for an individual who is determined to be disabled under the Social Security Administration guidelines.

Veterans and Parkinson's

In 2001, the Department of Veterans Affairs (VA) created six specialized centers known as the Parkinson's Disease Research, Education and Clinical Centers (PADRECCs). These centers serve veterans affected by Parkinson's disease through state-of-the-art clinical care, education and research. Each PADRECC services a large geographic area and is staffed by movement disorder specialists, neurosurgeons and other Parkinson's disease experts who assist veterans in managing their disease.

In order to serve veterans diagnosed with Parkinson's disease nationwide, the PADRECCs created the Consortium Centers, which offer specialized Parkinson's disease and movement disorder specialty care to veterans who cannot travel to a PADRECC. Currently, 51 Consortium Centers work collaboratively with the PADRECCs to ensure the highest level of care for all veterans.

Locate a PADRECC or Consortium Center.

Traumatic Brain Injury

In December 2013, the VA finalized a regulation that makes it easier for some veterans with moderate or severe traumatic brain injury (TBI) who also have parkinsonism, including Parkinson's disease, to receive additional disability pay. This regulation impacts veterans living with TBI who also have Parkinson's disease, certain types of dementia, depression, unprovoked seizures or certain diseases of the hypothalamus and pituitary glands. If a veteran had a moderate or severe TBI as a result of service and also has Parkinson's, then the Parkinson's will also be considered service connected for the calculation of VA disability compensation.

Agent Orange

In 2010, the VA recognized Parkinson's disease as associated with exposure to Agent Orange or other herbicides during military service in Vietnam. Veterans who develop Parkinson's disease and were exposed to Agent Orange or other herbicides during military service do not have to prove a connection between their disease and military service to be eligible to receive VA disability compensation. Veterans diagnosed with Parkinson's disease who served in-country or on the inland waterways of Vietnam between January 9, 1962, and May 7, 1975, are presumed exposed to Agent Orange or other herbicides.

This decision was based on an Institute of Medicine report, "Veterans and Agent Orange: Update 2008," which stated there was "suggestive but limited evidence that exposure to Agent Orange and other herbicides used during the Vietnam War is associated with an increased chance of developing Parkinson's disease."

Learn more about the VA's position on Parkinson's disease and Agent Orange.

Care Partners

The VA offers a number of support services for loved ones who care for a veteran through the VA Caregiver Program. You can locate a local Caregiver Support Coordinator or call the Caregiver Support Line at 1-855-260-3274.

Other Disability Policies

Many employers offer short-term and/or long-term disability plans that employees can choose to put money into while they are working. After leaving work because of a disability, qualified employees receive a portion of their salary while they are disabled. Private-sector plans usually begin paying out within a period of months after a disability begins. That compares favorably with most government disability programs, which can take a year or more to approve a disability claim and begin disbursing payment. Some private plans pay a set amount regardless of what an insured patient receives from Social Security, while other plans may offset the benefits they pay by whatever disability payments the insured may receive from Social Security.

Congressional Assistance

Members of Congress can provide assistance to constituents who are applying for government benefits. Your senators or representative may be able to help with:

In some cases, your senators or representative may be able to help expedite a Social Security disability claim. Your elected official can open a congressional inquiry into the status of your claim and it may result in your application being processed sooner.

It is important to note that a congressional inquiry does not affect the SSA's final decision regarding your eligibility for disability benefits.

To request assistance from your member, contact their office and explain what government benefit you are applying for. They may ask you to submit additional documentation or complete forms through their website.

Visit MJFF's congressional directory to find your member's contact information.

Additional Resources

Assistance Fund
The Assistance Fund's mission is to provide critically or chronically ill individuals with access to advanced therapies through a continuum of services and programs, including covering medical and prescription costs.

ConsumerReports.org
Consumer Reports Best Buy Drugs provides information to consumers on the costs of prescription drugs.

GoodRx.com
This site offers prescription drug price comparisons and free coupons for consumers.

Melvin Weinstein Parkinson's Foundation (MWPF)
MWPF offers assistance to individuals with Parkinson's disease who are struggling with financial issues to help pay for a home health aide, visiting care or to purchase specified medical equipment.

National Council on Aging
This organization provides a number of resoucres to help older adults improve their health and well being, including information on how to prevent falls.

NeedyMeds
This site provides information about assistance programs available to low-income patients and their advocates.

Partnership for Prescription Assistance Program
This program's mission is to increase awareness of patient assistance programs and boost enrollment of those who are eligible.

Patient Access Network Foundation
This foundation provides assistance to people with Parkinson's disease who have financial need.

The Patient Advocate Foundation
This nonprofit organization solves insurance and health care access problems by acting as a liaison between patients and insurers, employers and/or creditors.

Paying for Senior Care
This website is provided by The American Elder Care Research Organization to help people with Parkinson's with financial need find additional resources.

RxAssist
RxAssist offers a comprehensive database of pharmaceutical companies' patient assistance programs and provides practical tools, news and articles.

Rx Outreach
Rx Outreach is managed by Express Scripts Specialty Distribution Services, Inc. (ESSDS), a fully-licensed mail order pharmacy. The program offers prescription medicines to uninsured individuals and families, as well as those who have limited prescription drug coverage.

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