Parkinson's Toolkit

Education and Information about PD

National and local Parkinson's disease organizations provide a range of information services, including materials and booklets on Parkinson’s disease, treatments, and treatment-related issues.

• The National Parkinson Foundation has a national helpline 1-800-4PD-INFO (473-4636). You can speak to a Parkinson information specialist, ask questions, order publications, and connect your patients to support groups and/or local resources.

Emotional Support

Some people are reluctant to seek counseling, but having a mental health professional to talk to can reduce stress and help people better understand how to adapt and cope with changes that accompany chronic illness. Counseling can be provided by a psychologist, licensed social worker, or a licensed mental health professional. Ask your doctor for a referral or look in your local phone book. Remember that religious organizations can be helpful for some of your patients.

Home Health Care

Skilled nursing care, physical therapy, speech therapy, social work services, and nutrition counseling are all available at home. Provide this information to your patient. For a list of local resources, contact the National Parkinson Foundation helpline at 1-800-4PD-INFO (473-4636). Medicare can be contacted at 1-800-MEDICARE (1-800-633-4227) 24 hours a day, 7 days a week, including some federal holidays.

Financial and/or Insurance Issues

• You or your patient can find the local Area on Aging at 1-800-677-116 or www.eldercare.gov;
• You or your patient can order a copy of theMedicare and You 2011 handbook by clicking: Medicare & You 2011 at 1-800-MEDICARE (1-800-633-4227);
• You and/or your patient can contact your state or county health department and ask about state or national government assistance programs for which your patient may be eligible;
• American Red Cross, United Way.

Medication Assistance

• www.needymeds.org
• www.benefits.gov
• Melvin Weinstein Parkinson Foundation (757-313-9729).

Advanced Directives

You may want to talk to your patient and your patient's family about advanced directives including the following:

• Power of attorney
• Medical power of attorney
• Living will
• Do not resuscitate

Disability

• In evaluating disability claims, the US Social Security Administration (SSA) asks for information about the patient's medical condition and work and education history to determine if the patient is “disabled.”
• You may need to help the patient in filling out forms.
• Try to be specific as the information you provide can have an important impact in the SSA decision.

While the specific definition of “disability” for Social Security purposes is in the law itself, here is SSA’s plain language description:

“We consider you disabled under Social Security rules if, due to a medical or mental condition:

• You cannot do work that you did before and we decide that you cannot adjust to other work because of your condition(s), and
• Your disability is expected to last for at least one year or to result in death.”

There are two key sources of government paid (income) benefits for people with disabilities:

• The first is Social Security Disability Income (SSDI), which “pays benefits to the patient and certain family members if he/she worked long enough and paid Social Security taxes.”
• The second is Supplemental Security Income (SSI), which “pays benefits to disabled adults and children who have limited income and resources.”

Resources include:

• National Parkinson Foundation’s “Social Security Basics”: http://www.parkinson.org/Parkinson-s-Disease/Legal/Social-Security
• Government benefit website: www.benefits.gov;
• Social Security Administration: http://www.ssa.gov/pgm/disability.htm, 1-800-772-1213;
• Medicare/Medicaid:  www.cms.hhs.gov, 1-800-633-4227;
• The National Financial Resources Guidebook for Patients: http://www.patientadvocate.org/report.php,   1-800-532-5274.