Patient Resources and Support Services

Advance directives allow you to declare your wishes about medical care you would want if you were unable to speak for yourself. We recommend that every patient completes a healthcare proxy, which is a simple form that you can use to appoint someone to make decisions for you. Every state has its own health care proxy form. If your state is not listed below, find the correct form for your state. 

Health care proxy forms for:

• New York
• New Jersey
• Connecticut

Other considerations:

• Jewish patients may find the Halachic Medical Directive helpful to ensure that the decisions your healthcare proxy makes are in accordance with Jewish law.
• What Matters to Me: A Workbook for People with Serious Illness (PDF) can help you think about your values to help prepare an advanced directive.

Caring for someone with cancer can be physically, emotionally, and spiritually challenging. The Neuro-Oncology Division offers many resources to help support caregivers.

For help with keeping your loved one’s medical information organized and in one place please download Neuro-Oncology Patient Survivorship Plan (PDF). 

Caregiver Burnout describes a state of exhaustion that can occur due to the complexity of caring for someone with cancer. This is very common among those that care for someone with a brain tumor. Many people find the support of a home health aide invaluable to help alleviate caregiver burnout. Please look at Accessing Home Care NY (PDF) to learn more about how to access home care in the state of New York.

We also offer a monthly Brain Tumor Caregiver support group. Please see the list of our support groups below.

If you must take time off work to manage your medical condition, then you may need disability insurance. There are two kinds that you may qualify for: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Learn more about SSDI and SSI. 

After two years of receiving Social Security Disability Insurance, you will automatically qualify for Medicare. Find more information.

The Compassionate Allowance program from the Social Security Administration helps reduce the amount of time that a person with a qualifying disability must wait before their disability application is approved. Many types of malignant brain tumors are compassionate allowance conditions. View the complete list of diagnoses. 

More information about applying for disability with a brain tumor is listed in our Applying for Disability with a Brain Tumor (PDF). 

In addition to the support groups below, we also work closely with Columbia’s Psychosocial Oncology program to provide expert mental health support and medication management before, during, and after your treatment.

Your neuro-oncologist may recommend fertility preservation depending on your treatment plan. We work closely with the Columbia Oncofertility Program to help make fertility preservation more accessible.

Find more resources for fertility preservation by downloading Financial Resources for Fertility Preservation (PDF). 

Cancer care can impact your family’s finances tremendously, which is called financial toxicity. Learn more about financial distress and ways to reduce it.

In addition, Financial Assistance Programs (PDF) has information that can help offset some medical and non-medical financial burden and organizations such as Cancer Care offer limited financial assistance to people with different types of cancer.

Some neuro-oncology patients experience hair loss due to treatment. Your insurance plan may offer coverage for a wig (cranial prosthesis).

Low-cost wig options for people with cancer are offered by the American Cancer Society and Cancer Care.

Find more resources for hair loss by downloading Resources for Hair Loss (PDF). 

Between medical appointments, trips to the pharmacy, and other tasks to manage your care, spending quality time with your family can feel like a luxury that you no longer have time for. The Joyful Experience Resources Guide (PDF) lists free or low-cost leisure activities available to people or families affected by cancer.

In this workshop, you’ll learn more about applying for disability, accessing transportation, what your health insurance does and does not cover, and other resources for families affected by neurological illness.

Facilitated monthly by a licensed social worker who specializes in neurology.

• When: every 3 months, 5/11, 8/11, and 11/11
• Where: Virtual workshop via Zoom

• Description:
  • This is a monthly group for caregivers of patients with brain tumors, occurring on the last Wednesday of each month. Caregivers are invited to share their experience and feelings about taking care of their loved ones.
  • This group is hosted by the Keep Punching foundation and facilitated by Nicole Ross, LCSW, OSW-C.
• Eligibility:
  • Who may join: Caregivers of brain tumor patients
  • Registration is required.