Patient Support and Resources

Swedish Neuroscience Institute Epilepsy

Patient Support and Resources

Welcome to our new Swedish Neuroscience Institute Epilepsy Center Resource Page! We have created this page in an effort to assist our patients and their family members in finding community resources that may help them maintain safety and improve/maintain quality of life. The following list of resources represents a small fraction of the organizations and online tools available to individuals seeking resources. Please use independent judgment and request references when considering the use of services from any professional. We do not endorse any of these resources and request that you contact these agencies directly for their program criteria.

National and local community organizations offer help and support to patients and families with epilepsy.

EPILEPSY AND SEIZURE SPECIFIC AGENCIES
Epilepsy Foundation Northwest (www.epilepsynw.org)
Epilepsy (www.epilepsy.com)
Cleveland Clinic information on Non-Epileptic Seizures (http://my.clevelandclinic.org/Documents/Epilepsy_Center/08_NEU_060_NonEpilepsyPatient_v2.pdf)

Seizure Tracker (https://seizuretracker.com/)

PREPARING FOR YOUR HOSPITAL STAY OR OUTPATIENT VISIT

-Initial Visit Patient Questionnaire

-FAQs regarding VEEG Monitoring

-Preparation for VEEG Monitoring

-Adult Meal Hints and Ideas 
-Adult CH Parking Information
-Pediatric Meal Hints and Ideas FH 
-Pediatric FH Parking Information
-Local Seattle Hotel and Lodging
-Medicaid Transportation and Lodging Services
-Non Emergent Transportation Resources
-Patient Process for Alaska Medicaid Lodging
-Patient and Provider Process for Idaho Medicaid Transportation 
-Patient and Provider Process for Montana Medicaid Lodging
-Durable Medical Equipment Information and Agencies
-Angel Flight West provides free, non-emergency air travel for children and adults with serious medical conditions (www.angelflight.org/)
-My Chart Access (http://swedish.org/Patient-Visitor-Info/Medical-Records/Swedish-MyChart#axzz2B0ItcD6Y)
-Initial Visit Patient Questionnaire
-Medical Records: Swedish is required by law to maintain the privacy of your health information, to provide you with a notice of its legal duties and privacy practices, and to follow the information practices that are described in the Privacy Notice on our main Swedish.org page.

Our Health Information Management Department can help you obtain your medical records.

You may want to authorize disclosure of your medical records for the purpose of:
• Verbal disclosure only to your family members/caregivers
• Request for continuing care release to a new physician
• For you own records

To send a request, please contact Health Information Management 206-320-2626 or visit their website at: (http://www.swedish.org/Patient-Visitor-Info/Medical-Records#axzz2AF1isoEz)

-Special Needs: If you are deaf, hard of hearing, deaf-blind or have limited English Proficiency, we may be able to assist you. You may also call (206) 386-6000, state your language, and the Swedish operator will connect you to a telephonic interpreter who will assist you with your request. Patients with hearing loss may also call the TDD/TTY line at (206) 386-2022. You can also look through the Swedish website to find other ways that Swedish may be able to assist you with your special needs at: (http://www.swedish.org/Patient-Visitor-Info#axzz2AF1isoEz)

SWEDISH FINANCIAL ASSISTANCE

(Please contact the Financial Assistance Counselors for additional information at 206-386-2646)
-Swedish Medical Group Financial Assistance Application (for outpatient visits)
-Swedish Medical Center Financial Assistance Application (for inpatient admissions)

AMERICAN DISABILITIES ACT - SPECIAL ACCOMMODATIONS FOR EDUCATION AND EMPLOYMENT 
-Americans with Disabilities Act (http://www.ada.gov)
-Department of Social and Health Services Divsion of Developmental Disabilities (http://www.dshs.wa.gov/ddd/eligible.shtml)

-Disability Resources (http://www.disabilityresources.org/WASHINGTON.html)

-Division of Vocational Rehabilitation 1-800-637-5627 or (http://www.dshs.wa.gov/dvr/) – For individuals with a disability that would like to work but face substantial barriers to finding or keeping a job.

-Equal Employment Opportunity Commission (http://www.eeoc.gov/facts/epilepsy.html)

-Families and Advocates Partnership for Education (FAPE) (http://www.fape.org/)
-Job Accommodation Network (JAN) (http://www.askjan.org)

-Seattle Neurological Vocational Services Center (http://nvsrehab.org)
-University of Washington’s DO IT Program (http://www.washington.edu/doit/) DO-IT Center promotes the success of individuals with disabilities in postsecondary education and careers, using technology as an empowering tool.

BASIC NEEDS, CRISIS & EMERGENCY RESOURCES
Please visit the following internet websites for further information:
-Crisis Clinic (www.CrisisClinic.org)
-Senior Services (www.Seniorservices.org)
-Catholic Community Services (www.ccsww.org)

DENTAL, MEDICAL AND MENTAL HEALTH
-Bed Alarms through BedSeizureAlarm.com (http://www.bedseizurealarm.com) 
-Durable Medical Equipment Information and Agencies

-Helmets for Patients with Epilepsy (http://plument.com/) or (http://www.guardianhelmets.com/)
-Low Cost or Sliding Scale Public Health Centers in Seattle and King County – Medical (http://www.kingcounty.gov/healthservices/health/locations.aspx)
-Low Cost or Sliding Scale Public Health Centers in Seattle and King County – Dental (http://www.kingcounty.gov/healthservices/health/locations/dental.aspx)
-Low Cost or Sliding Scale Public Health Centers in Seattle and King County – Mental Health (http://www.kingcounty.gov/healthservices/MentalHealth/Resources/OtherOptions.aspx)

-SightLife for Sight and Hearing Impairment Services (www.sightlife.org)

-Crisis Clinic: If you are in an emotional crisis and live in King County, you may contact the 24-Hour Crisis Line through Crisis Clinic at 206-461-3222 or Toll-Free at 1866-427-4747 or through the TDD Line 206-461-3219. This is an anonymous and confidential service to assist you in the specifics of your situation and work with you on an effective answer. They are not equipped to respond to crisis oriented e-mails so please contact them directly.

If you are seeking information on health and human services, you may look at their Community Information Page at (www.crisisclinic.org).

If you are seeking assistance outside of King County, you may contact the 211 Community Information Line by dialing 2-1-1 or Toll-Free 1800-621-4636 or TDD Line 206-461-3610.

DOMESTIC VIOLENCE
-Washington State Domestic Violence Hotline: 800-562-6025 (voice/TTY)
-National Domestic Violence Hotline: 800-799-7233 (voice) or 800-787-3224 (TTY)

END-OF-LIFE, SUPPORT GROUP, GRIEF AND LOSS
-ARCH National Respite Locator (http://archrespite.org/respitelocator) for respite care assistance
-Association of Wish Granting Organizations (http://www.awgo.org/)
-Attorney General’s Office Dealing With Death (http://www.atg.wa.gov/DealingWithDeath.aspx)
-Burial, Cremation and Funeral Homes List

-Childcare Aware Resources (http://www.childcarenet.org/)
-Compassionate Friends (http://www.compassionatefriends.org/)

-Department of Veterans Affairs Burial and Memorial Benefits (http://www.cem.va.gov/bbene/eligible.asp)
-Epilepsy Support Groups through Epilepsy Foundation Northwest (http://www.epilepsynw.org/programs/education-and-networking-groups)
-End of Life Legal Resources

-Gilda's Club Support Group (http://www.gildasclubseattle.org/resources/Support.php?tid=4)

-Grief Share (http://www.griefshare.org/)

-GriefWorks (http://www.griefworks.org/)

-King County Widowed Information and Consultation Services (http://kcwics.org/index.html) 

-Make A Wish Foundation (http://www.wish.org/)
-Organizations Related to Donation and Transplantation (http://organdonor.gov)
-Seattle Children's Journey Program (http://www.seattlechildrens.org/about/stories/seattle-childrens-journey-program/)

-Sudden Unexpected Death in Epilepsy (SUDEP) (www.dannydid.org/sudep/)
-TAPS (Tragedy Assistance Program for Survivors http://www.taps.org/ a non-profit Veteran Service Organization)

-Twilight Wish Foundation (http://www.twilightwish.org/our-mission/) grants wishes to 68+ seniors, poverty level and/or lives in a nursing home
-What to Do When Someone Close to You Dies (http://www.funeralplan.com/funeralplan/about/whattodo.html)

INSURANCE, FINANCIAL AND PRESCRIPTION ASSISTANCE PROGRAMS
-List of Common Epilepsy Prescription Assistance Programs by Brand Name
-Community Health Access Program (http://www.kingcounty.gov/healthservices/health/personal/insurance/CHAP.aspx)
-Department of Labor (http://www.dol.gov/)
-Department of Social and Health Services (http://www1.dshs.wa.gov/)

-Project Access Northwest (http://projectaccessnw.org/contact.html)

-Social Security (http://www.socialsecurity.gov/seattle/)
-Washington State Health Insurance Pool (https://www.wship.org/Default.asp)
-Washington State Office of the Insurance Commissioner Statewide Health Insurance Benefits Advisors (SHIBA) (http://www.insurance.wa.gov/shiba/index.shtml)

LEGAL SERVICES, GUARDIANSHIP, LONG-TERM CARE PLANNING, ADVANCED CARE DIRECTIVES AND LIVING WILLS

-AARP (http://www.aarp.org/)

-Caring from a Distance (http://www.cfad.org)

-Department of Social and Health Services Aging and Disabilities Services Administration (www.adsa.dshs.wa.gov)

-Family Care Navigator (http://www.caregiver.org)

-King County Guardianship Forms (http://www.kingcounty.gov/courts/scforms/guardianship.aspx)
-Northwest Justice Project (http://www.nwjustice.org)

 -Senior Services (http://seniorservices.org/)
-Swedish Medical Center Durable Power of Attorney for Health Care, FAQs, Living Wills (http://www.swedish.org/Patient-Visitor-Info/Patient-Information/Preparing-for-Your-Hospital-Stay/Advance-Directives#axzz2AF1isoEz) 
-Washington State Bar Association (http://www.wsba.org/)
-United States Attorney Legal Services Pro Bono Programs – Washington State (http://www.usattorneylegalservices.com/free-legal-aid-washington.html )
-United States Immigration Support (http://www.usimmigrationsupport.org/contact.html)

PEDIATRICS AND PARENTS

-Adolescent Health Transition Project (http://depts.washington.edu/healthtr/index.html) for parents and children wishing to plan transition from adolescent to adult care

-Epilepsy and My Child (http://www.epilepsyandmychild.org)
-Epilepsy Mom (http://epilepsymoms.com/) for mothers of patients who have Epilepsy
-Epilepsy Parent Support Group (http://www.epilepsysupportnw.org/)
-Lotsa Helping Hands (http://nac/lotsahelpinghands.com)

-Mamapedia (http://www.mamapedia.com/article/moms-with-epilepsy) for moms with Epilepsy
-P2PUSA (http://www.p2pusa.org)

-Parent Trust for Washington Children (http://www.parenttrust.org/)
-The Center for Children with Special Needs (http://cshcn.org/)
-The Arc of Washington Parent to Parent USA (http://www.p2pusa.org/)
-Washington State Father’s Network (http://fathersnetwork.org/) for fathers of patients who have Epilepsy

REPORTING ABUSE AND NEGLECT
If you suspect abuse/neglect of a vulnerable adult or child, please call 1-866-363-4276 or visit to find out more about ways to report your concerns: (http://www.dshs.wa.gov/endharm.shtml)

REPORTING AMERICANS WITH DISABILITIES ACT GRIEVANCE
If you feel that the City of Seattle has not fulfilled ADA requirements, please report it to the City's Customer Service Bureau at 684-CITY (2489) or view their online website at: (http://www.seattle.gov/civilrights/ADA.htm). To read more about the Americans with Disabilities Act Information, you may visit the Washington State Legislature website at: (http://www.leg.wa.gov/legislature/pages/adainfo.aspx)

REPORTING EDUCATIONAL CONCERNS
The Office of the Education Ombudsman (OEO) resolves complaints, disputes, and problems between families and elementary and secondary public schools in all areas that affect student learning. If you have a concern and would like to receive assistance, you may contact Toll-free number: 1-866-297-2597 and a phone interpreter is also available. You may also visit their website at: (http://www.governor.wa.gov/oeo/) for further information.

REPORTING MENTAL HEALTH CONCERNS
If you or a family member receive services for mental health services through a publicly funded mental health system and have complaints/grievances/concerns, you may contact the Mental Health Ombudsman at the 24-Hour Confidential Message Service: 206-205-5329 or Toll Free: 1-800-790-8049 or visit: (http://www.kingcounty.gov/healthservices/MentalHealth/Services/ombuds.aspx) for further information.

SEIZURE DOGS
-Canine Assistants – (Georgia) http://www.canineassistants.org
-Brigadoon Youth & Service Dog Programs – (Bellingham, WA) http://www.brigadoondogs.org
-Prison Pet Partnership Program – (Gig Harbor, WA) http://www.prisonpetpartnership.org
-Paws with a Cause – (Michigan) http://www.pawswithacause.org
-Delta Society – (Bellevue, WA) http://www.deltasociety.org
-Summit Assistance Dogs – (Anacortes, WA) http://www.summitdogs.org
-Joys of Living Assistance Dogs – (Keizer, OR) http://www.joydogs.org
-Dogs for the Deaf – (Central Point, OR) http://www.dogsforthedeaf.org
-Assistance Dogs International – (California) http://www.assistancedogsinternational.org
-International Association of Assistance Dog Partners – (Michigan) http://www.iaadp.org
-Psychiatric Service Dog Society – (Virginia) http://www.psychdog.org

If you have any further resource questions or concerns, you may contact the Epilepsy Social Worker Marie at 206-320-3492.  The links directly take you to the agency/resource, if you experience any problems with the links please contact the agency/resource directly.

Created: November 20, 2012

Updated: May 9, 2013