#HeartofWhatWeDo – Care Services 101

Care Services plays a key role in the Heart of What We Do. The ALS Association Western Pennsylvania Chapter offers a full range of services and support to guide you through living with ALS. The Chapter Care Services team is here to provide information and education for those living with ALS, caregivers, family and friends, and healthcare workers.

Equipment Program

  • The Chapter offers a program to assist those living with ALS to obtain much needed medical equipment and assistive technology.
  • In partnership with several medical equipment suppliers and facilities, the Chapter is able to provide equipment free of charge for those living with ALS.
  • The Equipment Program offers a wide range of adaptive equipment to help with daily care to power wheelchairs and speech generating devices.
  • The Equipment Program is one of the most utilized resources available at the Chapter. With hundreds of items offered, the program provides solutions and support in the areas of mobility, speech, fine motor skills, personal hygiene, and everyday tasks.

Grants

The Chapter offers a grant assistance 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 assistance for the following:

Home Modifications: A one-time only grant that provides full or partial payment of such items as stair glides, ramps, or bathroom modifications.

Speech Generating Devices/Power Wheelchairs: This one-time grant is meant to supplement insurance coverage 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 to help a primary caregiver have a break from full time care responsibilities, to help when there is no caregiver available to assist with care or while waiting for state funded programs to start.

ALS Multidisciplinary Clinics

The ALS Association collaborates with some of the best ALS physicians and clinics across the United States to help ensure that people living with ALS have access to specialized care, based on best practices. Certified Treatment Centers of Excellence and Recognized Treatment Centers provide compassionate care in a supportive, family-oriented atmosphere.

This multidisciplinary care model brings together a team of health care professionals specially trained to address the needs of people living with ALS, allowing them to receive care from each discipline during a single visit.

The care team typically includes a neurologist, physical therapist, occupational therapist, respiratory therapist, nurse, dietitian, speech language pathologist, social worker, mental health professional and an ALS Association Chapter liaison.

Support/Resource Groups

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 selfcare tools. Class participants also receive a copy of “The Caregiver Helpbook”, developed specifically for the class.

Care Connection

The Care Connection 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 Support Group

The Caregiver Support Group is available to provide encouragement and comfort to those who are caring for someone living with ALS. The group is an opportunity to share your feelings, develop relationships, receive emotional support, and discuss common caregiving issues with other caregivers. This support group is open to all current caregivers.

Living with ALS Group

The Living with ALS group is a monthly meeting for those currently diagnosed with ALS. It’s an opportunity to meet, encourage and learn from each other.

Resource Group

Resource group meetings are a time for people living with ALS, caregiver, family members, and friends to learn and share about topics specific to ALS. Individuals can participate virtually via computer or phone.

Educational Materials

  • “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.

  • 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 participate virtually via computer or phone.

  • 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 caregiving. Several educational symposia are held throughout the year and at various locations in our service area.

To register with the Chapter for services, support, and to ensure you receive updates on educational programs, please call 412-821-3254 to speak with Director of Care Services, Marie Folino, MSW.

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