The primary goal of the Chapter�s Patient Services Department is to communicate with persons with ALS, their families and caregivers; to evaluate needs; to provide medical and health care referrals and educational resources. Home visits are made by our experienced professional staff and specially-trained volunteers.  There is never a charge for PALS and their families.

Last year, the Chapter restructured and consolidated its Patient Services programs under the leadership of long-time ALS staffer, Molly Rockey.  Ms. Rockey is a seasoned professional with many years of experience working with ALS patients.  Under her supervision are an Equipment Loan Pool Director, an Augmentative Communication Director, five Case Managers, and three Support Group Leaders.

Case Management

Our Case Management Department works to improve the quality of life of those affected by ALS by providing PALS and their families with assistance in navigating the social service systems and insurance maze.  Case Managers can help you assess your current needs and help you decide which issues need to be addresses and determine how to proceed.  Our Case Managers can advocate on your behalf with insurers, social service agencies, the Social Security Administration, or Medi-Care/Medi-Cal.  Case Managers are also available to make recommendations regarding legal, financial, and counseling resources, and transportation, in-home services, and respite care.

Alternative Augmentative Communication (AAC)

Many individuals with ALS experience a reduction in speech clarity and/or an inability to speak as a result of the weakness of the muscles involved in speaking.  Difficulty with or an inability to speak does not have to result in the loss of communication.  Many devices are available to assist with communication needs.  These devices range from low-tech communication boards to complex computer systems that can be operated with minimal movement.

Many insurance providers will cover at least a portion of the cost of a communication device.  Most insurance programs require an assessment by a Speech Language Pathologist and/or additional staff from a technology Center.  Technology centers rypically provide an interdisciplinary team and offer a full range of services including evaluation, recommendation, equipment setup, training, custom equipment modification, and follow-up.  The Center for Applied Rehabilitation Technology (CART)           is located in Downey and may be contacted toll-free at 877-RANCHO-1.

The Chapter�s Augmentative Communication Loan Program offers communication devices for loan to individuals without insurance coverage or who are awaiting insurance approval.  They type of equipment loaned is based on each person�s needs and the availability of equipment.

Equipment Loan Pool

Durable medical equipment in excellent working condition is available to ALS patients by loan at no charge. The equipment is assessed for appropriate use by our Equipment Loan Pool Director, Ferne Hayes.  Items generally available include:

• Walkers

• Canes

• Wheelchairs

• Grab bars

• Bedside commodes

• Adaptive untensils

• Seat cushions

• Shower chairs

Additional items available based on supply.  Consider contacting the Chapter before purchasing any equipment; we may be reached at 818.865.8067.

Support Groups

ALS affects the entire family with changes that can be challenging, stressful and, at times, frightening. Talking about it sometimes helps, as does having useful information on what to expect as well as on managing symptoms. The support group is an essential tool in helping patients and their caregivers, families and friends live with ALS. Led by trained medical professionals, support groups provide opportunities for group members to share their personal experiences and to learn more about living with ALS. They learn they are neither alone nor without help or hope. Meetings are free and open to all patients and concerned others regardless of where treated.  Support groups occasionally offer speakers on relevant topics and are designed to share information and strategies for preserving the independence and quality of life of both ALS patients and their caregivers.  We currently offer support groups in Pasadena, South Gate, and Ventura County/Westlake Village.

PALS Service Line

PALS can contact the Chapter�s Patient Services Intake Coordinator to register for services by calling (818) 540-4252.  Your needs will be addressed promptly. For your convenience, you may also call our Toll Free Patient Services Line at 1-866-750-ALSA (2572).

Education Services

The Chapter offers opportunities for persons with ALS, caregivers and healthcare professionals to learn about ALS, diagnosis, coping skills for daily living and emotional concerns. These educational programs, �Ask the Experts,� are offered free of charge, although reservations are required. Manuals and other educational materials regarding ALS are available through the national ALS Association.  In addition, our quarterly newsletter, The Messenger, provides research updates, as well as tips and tools for managing ALS.

Professional In-Service Demonstrations

The Patient Services Department is actively involved in the education of community healthcare professionals on issues of clinical management of ALS.  In-services are routinely provided to groups such as hospice, home healthcare providers, nursing homes, doctors and other professionals.  To request an in-service presentation, contact Molly Rockey, Patient Services Director, at 818.865.8067 X225.