Patient & Family Services
Our Chapter offers a full range of services to guide and assist you as you learn more about ALS. Here you will find pertinent information for patients, caregivers, family members, friends and healthcare workers. Our staff is here Monday through Friday to answer any questions you may have. Please don't hesitate to call us at (714) 285-1088 or e-mail us for more information at nvillegas@alsaoc.org.
Home Visits and Case Management
Our professional staff specializes in ALS care. We will visit with PALS (Persons with ALS) and their caregivers in their home to evaluate the patient’s current condition and offer practical ideas for sustaining their quality of life. We provide information on how to navigate the process to obtain insurance and healthcare benefits.
Support Group
IN-PERSON SUPPORT GROUP'S HAVE RESUMED AS OF APRIL 2022 AND WILL BE HELD THE 1ST WEDNESDAY OF EVERY MONTH. VIRTUAL SUPPORT GROUPS WILL CONTINUE AND WILL BE MOVED TO THE THIRD WEDNESDAY OF EVERY MONTH. TO SIGN UP FOR REMINDERS, EMAIL INFO@ALSAOC.ORG.
The Orange County Chapter currently has two general support group held monthly. These support groups are open to PALS (persons with ALS), their families, caregivers and friends. Speakers on relevant topics are combined with time for attendees to discuss questions, problems and new information. This group is held the first Wednesday of every month.
Equipment Loan Program
EQUIPMENT LOAN PROGRAM IS OPERATING WITH THE EXCEPTION OF EQUIPMENT DONATION PICK-UPS DURING COVID-19 CRISIS.
The Chapter maintains a loan program that consists primarily of used and donated equipment. There is no charge for the loan of equipment. Items generally available include:
• Hospital beds
• Power wheelchairs
• Scooters
• Canes
• Walkers and Walkers w/seat
• Seat cushions
• Shower buddies
• Shower chairs
• Sliding shower benches
• Manual wheelchairs
• Companion wheelchairs
• Ramps
• Grab bars for toilet
• Air mattresses
• Power / Manual Lifts (Hoyer)
Additional items available based on supply. Consider contacting the chapter before purchasing any equipment. If you would like to inquire about available items or if you are interested in making an equipment donation, please contact the Chapter office at 714/ 285-1088 or email nvillegas@alsaoc.org .
Augmentative Communication Devices
Many individuals with ALS experience a reduction in speech clarity and/or an inability to speak as a result of 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. 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 typically 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. The type of equipment loaned is based on each person's needs and the availability of equipment.
Professional In-Service Presentations
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 health care providers, nursing homes, doctors and other professionals. To request an in-service presentation contact the Chapter office at 714/ 285-1088.
Newsletter and Resource Library
The quarterly newsletter Reaching Out is published for PALS, friends and members of The ALSA-OCC as well as healthcare professionals. The Extra is published monthly for the latest news on research, advocacy and local events. The Resource Library is available by contacting the Patient Services staff at 714/ 285-1088.
Other Programs:
Respite Care (to apply for a Respite Care Grant, click here).
Transportation
Veteran's support group
Caregivers support group
Respiratory
Equipment
ALS Advocacy