PATIENT AND FAMILY SERVICES

A diagnosis of ALS can be overwhelming, confusing and frightening. If you or a family member has recently received a diagnosis of ALS, you probably have questions about the disease, the prognosis and the treatments available.

In addition to serving PALS (people with ALS), the Chapter provides services to people with primary lateral sclerosis (PLS) and progressive muscular atrophy (PMA) who live in Arizona.

The Patient and Family Services staff of the Arizona Chapter is committed to providing comprehensive support and resources to patients, caregivers, family members, friends and health care workers.
 
Our services are free of charge and we are continually expanding and refining our initiatives to serve the needs of the ALS community. If you would like we can send you an information packet describing the services our Chapter provides.  Please do not hesitate to contact us if you have a question, need information or assistance.
 
Kim Hughes
Director of Patient Services
Central Region
kim@alsaz.org
602-297-3800

Genevieve Northrup
Patient Services Coordinator
Central and Northern Region
genevieve@alsaz.org
602-297-3800

CLAYTON R. DEMO MEDICAL EQUIPMENT LOAN CLOSET

People with ALS (PALS) may need extensive durable medical equipment (DME) at some point during their illness. Our Equipment Loan Closet contains primarily used and donated equipment, providing a good temporary source of equipment. There is no charge for this equipment and you may use it as long as it is needed.

Below is a list of just some of the items that may be available for loan. Please contact the Patient and Family Services Coordinator in your area to check availability.
 
 - Adaptive aids  
 - Portable commodes 
 - 4 wheeled walker with seat and brakes  
 - Raised toilet seats  
 - Ramps   
 - Wheelchairs (power, manual, transport)   
 - Shower chair/bench  
 - Tub transfer bench  
 - Lift Chair   
 - Bed rail
 - Bidet
 - Bi-pap machine
 - Suction machine
 - Canes
 - Head & neck braces
 - Over bed table
 - Patient lift  
  

 
ALS CERTIFIED CENTERS

The mission of the ALS Association CenterSM Program is to define, establish and support a national standard of care in the management of amyotrophic lateral sclerosis (ALS), sponsored by The ALS Association.

The objective of the ALS Center Program is to encourage and provide state-of-the-art care and clinical management of ALS through:

 - The involvement of all necessary healthcare disciplines in the care of the ALS patient and family
 - The offering of care from a team of people specially trained to meet the needs of those living with
   ALS, regardless of the ability to pay whenever possible; when not possible, providing advice to
   treating physician
 - Collaborative work among Centers to enhance ALS patient care and techniques 

The ALS Association selects, certifies and supports distinguished regional institutions recognized as the best in the field with regard to knowledge of and experience with ALS; and which have neurological diagnostics and imaging, and available on-site licensed and certified ancillary services on clinic days including (but not limited to): 
 
 - Physical therapy
 - Occupational therapy
 - Respiratory therapy
 - Nursing
 - Registered dietician services
 - Ph.D. psychology or psychiatry
 - Speech and language pathology
 - MSW social work services

To contact a center in Arizona, please call:

Banner Good Samaritan Medical Center
1012 E. Willetta Street
Phoenix, AZ 85006
Medical Director - Todd Levine, M.D.
602-239-6533

The ALS Clinic at Mayo Clinic Scottsdale
13400 E. Shea Blvd.
Scottsdale, AZ 85259
Medical Director - E. Peter Bosch, M.D.
480-301-8100

HOME VISITS AND INDIVIDUAL SUPPORT

Experienced Patient and Family Services Coordinators work with you to help determine your needs for care and equipment, offer emotional support and share valuable information. Visits, regular consultations by phone and during clinical assessments, and seminars allow our staff to monitor each patient’s needs. If you would like a home visit, please contact the Patient and Family Services Coordinator in your region below. 

 
RESPITE CARE PROGRAM

This program provides assistance for respite care to family caregivers of ALS patients. The ALS Association Arizona Chapter is committed to supporting the family - time out for the caregiver is frequently last on the list of “should do’s” for the day.  We believe that when the primary caregiver gets a break from the daily routine and takes a timeout for themselves, their health is better maintained and they can return feeling refreshed.

At the Chapter, we have developed the Respite Care Program to help provide this time-out-for-renewal to caregivers. The program will provide from 16 to 22 hours of respite care, up to $400 in Respite Care Services.  The type of provider will be determined by the skills required for care of the PALS - Home Care services (services assisting with daily activities in the home) or Home Health Care services (services assisting with medical needs:  tube feeding, BiPAP or ventilation).

To be eligible for respite assistance, the patient must have a confirmed diagnosis of ALS, PLS or PMA; reside in the Arizona and be registered with the ALS Association Arizona Chapter. To participate in the program, caregivers need to complete an application.  Once approved, a representative from the professional care agency will contact you to set up a time to assess and schedule your respite care.  You have up to six (6) months from the time the approval is authorized, to complete it. If more time is needed, please contact Kim for approval at 602-297-3800.

If denied, a reason for denial will be given.  You may re-apply six months after the services have been provided.  Please speak with your Patient Services and Family Coordinator to re-apply.  A new application will need to be completed.

If you have any questions, please contact Kim at 602-297-3800 or kim@alsaz.org.

TRANSPORTATION PROGRAM

The Transportation Program offers a person with ALS transportation to ALS medical appointments.  Transportation is available to ALSA Clinics, multi-disciplinary clinics which specialize in ALS, or to a medical appointment with a neurologist. 

To be eligible, the patient must have a confirmed diagnosis of ALS, PLS or PMA; reside in the Arizona and be registered with the ALS Association Arizona Chapter.  A PALS should also have no other available transportation. PALS must be able to exit their home or building without the assistance of the driver, either on foot or with a wheelchair ramp. We highly recommend the PALS be accompanied by a caregiver—in some cases the transportation company may require an attendant for the patient.  The van drivers are solely there to drive the van and cannot assist with getting the patient into or out of the home and they cannot accompany the patient into the appointment.

To enroll in the transportation program, you must complete an application form and return it to the Chapter office.  If you have any questions, please contact Kim at 602-297-3800 or kim@alsaz.org. 
 

SUPPORT GROUP

Our Chapter runs support groups throughout our state to help patients, families and caregivers cope with living with ALS. Led by our Patient and Family Services Coordinators, group members share their personal experiences and their knowledge of the disease. They learn they are not alone nor without help or hope.

Local area resource support groups are available in Phoenix, Mesa, Glendale, Prescott and Tucson. We have groups that are available for caregivers and survivors only and groups for both patients and their family members and friends. The meetings are free and are open to patients and others in the ALS community. These groups are designed to share information and strategies for preserving independence and quality of life for ALS patients and caregivers. Groups will occasionally offer speakers on relevant topics.

Contact the support group leader below before attending your first meeting to confirm the meeting day and time.

Mesa - Patients, caregivers, friends and family
When: Second Tuesday of each month, 1:00PM to 3:00PM
Where: Mesa Baptist Church
2524 S Alma School Rd, Room 6, Mesa, 85210
Contact: Genevieve Northrup, Patient and Family Services Coordinator
602-297-3800 or genevieve@alsaz.org

Glendale - Patients, caregivers, friends and family
When: Second Thursday of each month, 1:00PM to 3:00PM
Where: Church of Arrowhead
7902 W Union Hills Dr, Glendale, 85308
Contact: Kim Hughes, Director of Patient and Family Services
602-297-3800 or kim@alsaz.org

Phoenix - Survivors only
When: Third Tuesday of each month, 5:30PM to 7:30PM
Where: ALS Association Office
4643 E Thomas Rd #1, Phoenix, 85018
Contact: Kim Hughes, Director of Patient and Family Services
602-297-3800 or kim@alsaz.org

Phoenix - Caregivers, friends, family and survivors only
When: Fourth Tuesday of each month, 5:30PM to 7:30PM
Where: ALS Association Office
4643 E Thomas Rd #1, Phoenix, 85018
Contact: Genevieve Northrup, Patient and Family Services Coordinator
602-297-3800 or genevieve@alsaz.org

Tucson - Patients, caregivers, friends and family
When: First Thursday of each month, 10:00 AM to 12:00PM
Where: Our Savior’s Lutheran Church
1200 N Campbell, Tucson, 85719
Contact: Kim Hughes, Director of Patient and Family Services
602-297-3800 or kim@alsaz.org

Tucson - Caregivers, friends, family and survivors only
When: Third Thursday of each month, 1:30PM to 3:30PM
Where: Information and Referral Services
3130 N Dodge, Tucson, 85716
Contact: Kim Hughes, Director of Patient and Family Services
602-297-3800 or kim@alsaz.org

Prescott - Patients, caregivers, friends and family
When: Fourth Monday of each month, 12:30PM to 2:30PM
Where: VA Hospital, CLC Building
500 Highway 89, Prescott, 86313
Contact: Genevieve Northrup, Patient and Family Services Coordinator
602-297-3800 or genevieve@alsaz.org