Patient & Family Services in Western Pennsylvania
Our Chapter offers a full range of services to guide and assist you as you learn more about ALS. The pages without the Patient & Family Services section of our website offer a wide range of information for patients, caregivers, family members, friends, and healthcare workers. Please don't hesitate to call us at 1.800.782.4747 or e-mail us at firstname.lastname@example.org if you have questions. Our staff is available Monday through Friday during regular business hours.
The ALS Association Western Pennsylvania Chapter Services
The ALS Association Western Pennsylvania Chapter provides the following services and programs to eligible individuals at no charge and does not bill insurance companies:
Consultation with Healthcare Professionals
Those living with ALS, their families, friends, caregivers, and health care professionals have the opportunity to speak with a Social Worker, Speech-Language Pathologist and Occupational Therapist regarding many aspects of ALS care, available community resources and services. Home visits by these professionals are also available for consultations, evaluations, and recommendations.
The Chapter offers a program to assist those living with ALS to obtain needed medical equipment and assistive technology.
Loan Closet: in partnership with several medical equipment suppliers and facilities an equipment loan closet makes it possible to provide equipment free of charge for those living with ALS. The loan closet offers a wide range of equipment from adaptive equipment to help with daily care to power wheelchairs and speech generating devices. All items are subject to availability.
Financial Support: to assist with co-pays through a Chapter Grant Program. The Norma Simon Equipment and Nutritional Supplement Program will reimburse patients up to $250 a year for equipment, personal emergency response systems or nutritional supplements.
Assitive Technology/ Environmental Access: provides assistance with computer access, communication, and obtaining equipment that assits individuals with managing their home environment.
Chapter Grant Program
The Chapter offers a grant assitance program for home modifications, speech generating devices, power wheelchairs or respite/home care that meets the needs of those living with ALS. This program is subject to the availability of funds and includes assitance for the following.
Home Modifications: A one-time only grant that provides full or partial payment of such items as a stairglide, ramps, or bathroom modifications.
Speech Generating Devices/ Power Wheelchair: This grant is to supplement insurance coverage where the Chapter will provide 20% of the co-pay, up to $20,000, towards the purchase of a speech generating device or a power wheelchair.
Respite/ Home Care Program: This program provides periodic short term relief to those living with ALS that do not have A.) the financial means to hire temporary help; B.) family members or friends willing or able to provide patient care for a few hours each week; or C.) insurance coverage that provides for skilled or unskilled home care professionals; or D.) while waiting for state funded programs to start.
*Eligible primary caregivers will be considered for a respite home care grant once every six months unless other notification is provided. Home Modifications, Speech Generating Devices or Power Wheelchairs are one time only grants.
The Chapter collaborates with transportation companies to provide efficient and accommodating transportation for ALS patients. Patients can utilize the transportation service for clinic appointments, resource group meetings or any other Chapter-related event.
Caregivers provide a tremendous amount of care for their loved ones living with ALS. The Chapter recognizes the importance of supporting family caregivers; therefore the following programs are available to informal caregivers.
Powerful Tools For Caregivers Class - A national program designed for caregivers offered several times throughout the year. The 6 weekly classes provide information to caregivers to develop a wealth of self-care tools. Class participants also receive a copy of “The Caregiver Helpbook”, developed specifically for the class.
Care Connection - Many times when friends and family learn about someone with ALS, they want to help. The Chapter can assist in organizing this network of volunteers from your community of friends, neighbors, members of community organizations, through the Care Connection Program. The program provides a plan for organizing help, training and information about what approaches tend to be most effective. The Care Connection uses a website – lotsahelpinghands.com – that allows volunteers to sign in and see the community calendar where tasks have been posted by a volunteer coordinator.
Caregiver Appreciation Weekend – Each year the Chapter holds a Caregiver Appreciation Weekend which provides caregivers with a relaxing break to replenish their minds and bodies. It’s also a great opportunity to meet other caregivers and informally support one another.
Educational Material and Programs
As a service to the ALS Community we provide various educational resources including The ALS Association's "Living with ALS" manuals and videos, as well as other related materials regarding care and information. The Chapter also provides the following:
“ALS Bulletin….. Keeping you Posted”: A monthly e-newsletter sent to those living with ALS, their family and caregivers providing information about ALS, upcoming Chapter events, and webinars. Just let us know if you would like to be on the email distribution list at email@example.com.
Resource Groups: Resource group meetings are a time for patients, caregivers, family members and friends to learn, ask, share and grow throughout their ALS experience. Individuals can also participate virtually via computer. Our Chapter calendar lists the dates and times for these resource groups.
Educational Symposia: the Chapter’s symposiums are excellent learning opportunities and cover a variety of subjects from patient care, research, and advocacy, to new approaches to assistive technology and care giving. Several educational symposia all held throughout the year and at various locations in our service area.
To register with our chapter for services and support, please call 1-800-967-9296 to speak with our Director of Care Services.