Coping with a chronic illness such as amyotrophic lateral sclerosis (ALS) can become quite emotionally draining for people with ALS and their families. The thought of losing physical function combined with financial concerns and quality of life issues can compound and create additional stress.
The Center for ALS and Related Disorders at The Cleveland Clinic is available to provide support for people with ALS and their families to help them learn how to cope with the disease.
The Center’s team of caregivers is willing to listen to the concerns of people with ALS and their families. Social workers are just one part of the care-giving team who can offer treatment in a compassionate setting.
Social workers provide personal support to people with ALS and their families by offering:
- Short-term counseling and referrals for ongoing counseling.
- Information about home care assistance services and assistive devices.
- Recommendations of community resources and local and national agencies that offer both information and support for ALS.
- Financial resource information.
- Home care assistance.
The Cleveland Clinic’s Department of Home Care Services is available to discuss home care options, including a visiting nurse, home health aid or physical and occupational therapists. Some insurance companies cover these expenses. The Department of Home Care Services also can help people with ALS decide which home care option best meets their needs.
The Hospice of the Cleveland Clinic is another service available when a person with ALS needs more intensive care. The hospice offers nursing services, home health aides, social work services and pastoral care. Alternative options can be discussed when people with ALS need more care than can be provided in the home.
Financial Resource Information
Depending on individual financial capabilities, some people with ALS may be eligible for certain government programs.
The government provides three programs for people who are disabled and are unable to work:
Social security disability
Eligibility and amount covered is determined by each individual’s work history. Information can be obtained by contacting the nearest Social Security Office.
Supplemental Security Income
This program is based on the type of a person’s disability and their income/assets. This is a program primarily for people who do not have a work history with Social Security. Information can be obtained by contacting the nearest Social Security Office.
The health insurance provided by the government for those who are eligible, based on a person’s disability and their income/assets. Information can be obtained by contacting your county’s Department of Human Services.
The Waiver 4 and PASSPORT programs are also available for financial assistance. These programs provide an alternative to nursing home placement through coordinated in-home services. These programs are available to adults eligible for Medicaid who are 60 years of age or older.
Quality of Life Issues
The issues of life support, nutritional and hydration devices as well as respiratory assistance are difficult, yet important topics for people with ALS to discuss with their families. The personal choices of people with ALS must be taken into consideration first. Physicians and nurses are available to discuss the various options people with ALS have.
Information about “advance directives,” such as living wills and durable power of attorney for health care can also be provided.
The living will exercises a patient’s right to refuse or accept medical treatment that artificially prolongs his/her life. This document is prepared while the patient is fully competent, in case he/she becomes incompetent of making this decision at a later time. This document provides clear instructions regarding the patient’s choice of extended medical care.
The durable power of attorney for health care is the right of patients to appoint another person to speak for them if they become incapable of expressing their medical treatment preference. An attorney should devise this document so that it conforms with state laws and court precedents.