Resources

 

Transportation

ADA Paratransit
  • Americans with Disabilities Act (ADA) is federal law that requires public transit agencies to provide comparable services for persons with disabilities who are unable to use the bus or rail.  An application must be submitted on their site.
Disabled Parking Placard
  • Most movement disorder patients can benefit from having a disabled parking placard or license plate issued by the California Department of Motor Vehicles (DMV).  The application must be completed by the patient and disability certification must be signed by the physician.

Disability

California State Disability Insurance (SDI)
  • SDI is a partial wage-replacement insurance plan for California workers. The SDI programs are State-mandated and funded through employee payroll deductions. Workers covered by SDI are covered by two programs: Disability Insurance and Paid Family Leave.
Disability Insurance Program
  • The Disability Insurance (DI) program provides affordable, short-term benefits to eligible workers who suffer a loss of wages when they are unable to work due to a non-work-related illness or injury.
Paid Family Leave Program
  • The Paid Family Leave (PFL) program was established for workers who suffer a loss of wages when they need to take time off from work to care for a seriously ill spouse, parent or registered domestic partner.

Home Health Care

The National Association for Home Care and Hospice (NAHC)
  • NAHC is a nonprofit organization that represents the nation's 33,000 home care and hospice organizations. NAHC receives requests from members, other health care providers, government officials, journalists, scholars, and industry analysts for the latest facts and figures on home care and hospice. NAHC provides information to help its members maintain the highest quality of care and is committed to excellence in every respect.

Support Groups

Atypical Parkinsonian Disorders
  • For patients and their caregivers dealing with Atypical Parkinsonian Disorders like PSP, CBD, MSA, OPCA, SND, SDS 
  • Location: UCSD Thornton Hospital, 9300 Campus Point Drive, La Jolla, CA 92037, SDG&E Room (3rd floor)
  • Meeting Time(s): 3rd Thursday of every month from 1:00pm - 2:30pm
  • Facilitator: John Jenkins (619) 787-2760, Email: jenkins356@sbcglobal.net
Dystonia Support & Advocacy Group of San Diego
  • For patients, their family and friends that would like to be part of the Dystonia support group and attend meetings
  • Location: Alvarado Hospital, 6655 Alvarado Rd., San Diego, CA 92120
  • Meeting Time(s): 3rd Saturday of every other month (Jan, March, May, July, Sept & Nov) from 1:00pm – 3:00pm
  • Leader: Martha Murphy, Website: http://dystoniaofsandiego.com
Essential Tremor
  • The San Diego Essential Tremor Group is a place to come together learn about essential tremor and shake up awareness in our community.
  • Location: TBA
  • Meeting Times(s): Quarterly
  • Leader: Carolina Conway, Website: http://sandiegoessentialtremor.weebly.com/
Parkinson's Disease Tourette Syndrome

    Botulinum Neurotoxin

    There are programs in place to help people access botulinum neurotoxin and to assist patients with or without medical insurance achieve appropriate reimbursement for their treatment.

    Botox Reimbursement Solutions & Patient Assistance Programs
    • This program includes a Botox Hotline and Botox Patient Assistance Program to assist patients who are receiving Botox injections. The hotline is designed to respond to reimbursement questions and help individuals access Botox. Visit Botox Reimbursement Solutions or call 800-44-BOTOX, Option 4 or 800-530-6680 for more information.
    • The Botox Patient Assistance Program is dedicated to helping financially eligible patients gain access to Botox. A special website offers information about the program, who may qualify, and how to apply. Visit Botox Patient Assistance or call the Botox Hotline at 800-44-BOTOX, Option 6.
    • The Botox® Partnership for Access Prepaid MasterCard® Program provides prepaid cards per treatment to help qualified patients meet their Botox® out-of-pocket expenses. Eligible patients, had out of pocket expenses like co-pays or co-insurance for toxin and receiving treatment for chronic migraine, upper limb spasticity, cervical dystonia, or blepharospasm.
    Cervical Dystonia Fund
    • The Cervical Dystonia Fund is dedicated to assist insured patients who cannot afford the out-of-pocket costs associated with any FDA-approved treatment for cervical dystonia. The program is sponsored by Allergan and administered by the National Organizations for Rare Disorders (NORD). NORD can be reached at 800-999-6673, Option 3 or 800-44-BOTOX, Option 6.
    Solstice Service & Support Center (Myobloc)
    • Solstice Neurosciences has created a Service & Support Center to provide information and address questions regarding reimbursement for their product, Myobloc. The Service & Support Center can be reached at 888-461-2255. Certified Medical Insurance Specialists who understand the regional nuances of Myobloc reimbursement staff the Service & Support Center.
    Ipsen PACE Program (Dysport)
    • Ipsen has developed a reimbursement program that provides comprehensive access and support for U.S. patients and healthcare providers. PACE (Patient Access, Care, and Education) offers a customer service call center to assist people seeking information about Dysport. For more information, call 888-525-2423.
    Merz (Xeomin)
    • The Xeomin Patient Co-payment Program offers eligible patients assistance for their actual out-of-pocket costs for therapeutic treatment with Xeomin. Eligible treatment-related costs may include the cost of Xeomin, associated guidance therapy, and related administration fees.

    Other Resources

    Parkinson's Disease

    Atypical Parkinsonian Disorders

    Dystonia

    Huntington's Disease

    • Huntington Study Group
    • Southern Caregiver’s Resource Center (SCRC): (858) 268-4432 
    • The Access and Crisis Line: (800) 479-3339 
    • Aging and Independent Services: (800) 510-2020 
    • HD Society of America, San Diego: (760) 752-1844 
    • HD Society of America (800) 345-HDSA 
    • Genetically Handicapped Person’s Program, Dept. of Health Services: (800) 639-0597 
    • Legal Aid Society of San Diego: (619) 262-0896
    • National Health Law Program 

    Tourette Syndrome

    Other Movement Disorders