Sharing Information Loud and Clear September 2021
In This Issue:
- Message from the Chairperson
- Message from the Vice-Chairperson
- National Service Dog Month
- Emergency Broadband Benefit Program
- Spinal Cord Awareness Month
- Emergency Preparedness: Building an Emergency Kit
- Save the Date!
- ACL DIAL Line
photo description: Woman reading Braille, wheelchair user on beach facing away from camera with arms raised triumphantly, and two smiling women posing for photo
Message From The Chairperson
Photo description: Lisa Hayes, SILC Chairperson
Greetings Valued Independent Living (IL) Leaders and Community Members,
I’m Lisa Hayes, I am humbled and grateful to be elected your new SILC Chair. I would like to express my sincere thanks to Peter Mendoza, past chair for his amazing leadership & friendship, I definitely have huge shoes to fill!
I am the Executive Director of Rolling Start, the ILC serving San Bernardino, Inyo and Mono counties where I’ve been for three years. As a person with a disability since birth – I’m actually relatively new to the independent living movement. This is my 3rd life career; my first being in the “oil industry” I worked for Ultramar, a Canadian oil company, later purchased by Valero for 8 years, where I did contracting for unbranded gasoline. In the transition, I was invited to move to San Antonio Tx, but opted out. Quite by accident, I ended up working in managed care. Temping to help MedPartners recontract their network, transitioned into a full time position, which led to new jobs & responsibilities with PacifiCare, United Healthcare and the last 10 years with Molina Healthcare. Who would have thought in those 23 years as I became increasingly aware of the challenges & gaps people with disabilities faced when accessing healthcare, in particular long term services & supports (LTSS) would lead to what I am doing today.
The catalyst that led me to want to work at an ILC was taking care of my dad in the last eight months of his life. I was his primary caregiver, but I learned first hand the challenges of coordinating LTSS. Should have been easy, right? For all of you who have done it, you know, it is incredibly frustrating. I often felt like our “system” was rigged and that it was designed to be so difficult that we would acquiesce and eventually use a nursing facility. I was grateful for a local ILC, who helped me navigate caregiving, and loaned me a ton of AT so that I could keep my dad at home, where he wanted to be.
As SILC chair, I hope to support the completion of our current SPIL goals, and the development of a phenomenal new 3 year SPIL that will not only address the changing needs of the IL network, but also work with our partners to put a spotlight on the amazing work the network is doing.
In my “spare” time – I am a total Broadway musical geek, my favorite movie of all time.. the Wizard of Oz (love the music – but the political parody is priceless!). I live in Bellflower, CA with my son Chris and Duke – a larger than life poodle/terrier rescue.
I am looking forward to serving with Lidia Andrade-Zuniga, our new Vice Chair and the incredible SILC team under Carrie’s leadership.
In Unity and Solidarity,
Message From The Vice-Chairperson
Photo description: Ligia Andrade-Zuniga, SILC Vice- Chairperson
¡Hola! For those of you that don’t know me my name is Ligia Andrade Zuniga (she/her/hers), and I am the new Vice- Chair of the SILC. I am also the Chair of the Communication and Collaboration Committee. I was appointed to the SILC in 2018, so I’m going on my fourth year. What I love about this organization is being able to advocate on behalf of individuals with disabilities all over the state of California with other amazing leaders. However, what I love the most is the people that I have met along the way. They are our colleagues on the SILC, legislators all over the state, other SILC leaders in other states, constituents, community partners, and the amazing staff that we have. The experiences that this opportunity has brought me have been amazing!
A little bit about me….
I was born and raised in the Bay Area specifically on the Peninsula. I am first generation North American born, my parents were born in Guatemala. Preserving and celebrating not only my cultural identity, but also the intersections of cultures that also make up my identity (like my disability culture) is extremely important to me. I have been working in nonprofits, grassroots organizing, government, community programming, education/literacy, youth programming, and social justice for over 20 years. I attended Notre Dame de Namur University in Belmont, California where I received a Bachelor’s Degree in Human Services with an emphasis in Counseling and Administration, as well as a Master’s Degree in Public Administration. In 2009, almost a year after graduating from graduate school, I sustained a spinal cord injury which connected me to the disability community. 6 months later, I began to volunteer as a Peer Supporter through the Spinal Cord Injury Peer Support Program at Santa Clara Valley Medical Center where I did my rehabilitation. In 2010, I began working for the Silicon Valley Independent Living Center in the de-institutionalization program, where I was introduced to disability justice and the independent living movement.
Currently, most of my work is in disability and social justice, public policy/legislation, and sexuality and disability education. I am extremely passionate about reproductive health/sexual health for under-served and invisible communities, educating and creating access to information, advocacy, and services. I am highly involved in civic engagement locally, providing much-needed advocacy that influences policy affecting individuals with disabilities. I was also recently elected to the San Mateo Union High School District Board of Trustees.
I am grateful for our previous Chair and Vice-Chair, Peter Mendoza and Lisa Hayes that worked so hard in their tenure to provide us with great direction and vision. I am now looking forward to working with our new Chair Lisa Hayes who is a phenomenal leader in our community!
There are so many things to advocate for within our community. However, my priorities, the issues I would like to focus on are the following:
- In-Home Care and the reformation of the IHSS program.
- Sexual health and reproductive health rights for people with disabilities.
- The empowerment and leadership of youth with disabilities.
- Public office and civic engagement for individuals with disabilities.
I look forward to working with new council members as well as all of our current members. I am excited for all of the important and much-needed work that will come out of our collaborative partnerships. We must continue our intention of social justice creating opportunities and breaking down barriers for everyone in our communities.
“We urgently need to bring to our communities the limitless capacity to love, serve, and create for and with each other.”- Grace Lee Boggs
September is National Service Dog Month
Photo description: A yellow Labrador service dog with harness.
September is National Service Dog Month, a time devoted to raising awareness and showing appreciation for the extraordinary work service dogs do every day for the people in their care. Join us in celebrating and honoring these special heroes who dedicate their lives to help their human companions.
Service dogs are specially trained to perform specific tasks for people with disabilities as defined by the Americans with Disabilities Act. They can be trained to retrieve objects, assist with balance, give seizure or diabetic alerts, or assist those with psychiatric disabilities. Service dogs provide companionship while inspiring confidence and they live to serve and assist their handlers. With the help of a service dog, humans can better manage disabilities and live fuller lives.
These special pups exemplify the amazing healing power of the human-animal bond. We all know dogs are a person’s best friend – they are loyal, devoted, loving, dependable and typically cuddly. However, research shows living with a canine companion can also provide physical benefits varying from improved cardiovascular health and increased physical activity to lower cholesterol and decreased blood pressure. They also can give support and a sense of calm for our daily emotional and psychological stresses.
This month and every month, we recognize the heroic work of service dogs across the world.
Want to read more about service animals? Visit the Department of Rehabilitation webpage here to learn more.
The Emergency Broadband Benefit Program (EBB)
Photo description: Laptop computer, open with blue screen
The EBB program is a Federal Communication Commission (FCC) program that is providing a temporary monthly discount for qualifying low-income households. Eligible households may receive up to a $50/month discount on internet service, up to $70/month if your household is on qualifying Tribal lands, and a one-time discount of up to $100 for a laptop, tablet, or desktop computer.
September is Spinal Cord Injury Awareness Month!
Photo description: Green background with white letters “Spinal Cord Injury Awareness Month September” with a green awareness ribbon
National Spinal Cord Injury Month (National SCI Awareness Month) in September aims to educate the general public regarding SCI and improve the support for those with SCI.
Those with SCI face obstacles most people rarely think about. Depending on the severity of the injury, someone with SCI may require:
- A wheelchair adaptive home or assistive technology.
- Outside support and assistance, or 24 hour care.
- An adaptive vehicle, wheelchair lift, or ramps.
- Businesses and organizations that are accessible and that will accommodate their mobility equipment.
The causes of SCI are often caused by accidents such as motor vehicle accidents, falls, and sports and recreational injuries. Other causes of SCI include acts of violence or surgical complications.
An SCI is either complete or incomplete. A complete SCI results in complete paralysis below the injury and is usually permanent. Alternatively, some function remains on one or both sides with an incomplete SCI and there is potential for improvement.
While an SCI is a life-altering diagnosis, rehabilitation, adaptive equipment, treatments and accessibility are improving all the time. Organizations around the country help those with SCI to access mobility equipment such as accessible vehicles, scooters, lifts, and wheelchairs. They also offer support through volunteers, social networking and more. California’s 28 Independent Living Centers (ILCs) are a great place to start.
All through September, SCI Awareness Month offers opportunities to get involved.
- Donate – Donations support research, support organizations, and improved accessibility. Join or organize a fundraiser to show your support.
- Advocate – Support of those with SCI includes advocating on their behalf.
- Share – Take to social media and share information regarding fundraisers, volunteer organizations, resources, or even your own story.
- Support – Spend time with loved ones with SCI. Listen and learn from their experiences and support their goals.
Post your events and stories on social media using #SCIAwarenessMonth.
Emergency Preparedness: Building an Emergency Kit
In addition to having your basic survival supplies, an emergency kit should have items to meet your individual needs in various emergencies. Consider the items you use every day and which ones you may need to add to your kit.
Tips for People Who are Deaf or Hard of Hearing
- Weather radio (with text display and a flashing alert)
- Extra hearing-aid batteries
- Pen and paper (in case you have to communicate with someone who does not know sign language)
- Battery operated lantern to enable communication by sign language or lip reading, especially when the electricity is out and it’s dark.
Tips for People Who are Blind or Have Low Vision
- Mark emergency supplies with Braille labels or large print. Keep a list of your emergency supplies and where you bought them on a portable flash drive or make an audio file that is kept in a safe place where you can access it.
- Keep communication devices for your particular needs, such as a Braille or deaf-blind communications device as part of your emergency supply kit.
Tips for People with Speech Disability
- If you use an augmentative communications device or other assistive technologies plan how you will evacuate with the devices or how you will replace equipment if it is lost or destroyed. Keep model information and note where the equipment came from (Medicaid, Medicare, private insurance, etc.).
- Plan how you will communicate with others if your equipment is not working, including laminated cards with phrases and/or pictogram.
Individuals with Intellectual or Developmental Disabilities
- Keep handheld electronic devices charged and loaded with videos and activities.
- Purchase spare chargers for electronic devices and keep them charged.
- Include sheets and twine or a small pop-up tent (to decrease visual stimulation in a busy room or to provide instant privacy).
- Consider a pair of noise-canceling headphones to decrease auditory stimuli.
- Have comfort snacks available.
Tips for People with a Mobility Disability
- If you use a power wheelchair have a lightweight manual chair available as a backup if possible.
- Show others how to assemble, disassemble and operate your wheelchair.
- Purchase an extra battery for a power wheelchair or other battery-operated medical or assistive technology devices. If you can’t purchase an extra battery, find out what agencies, organizations or local charitable groups can help you buy one. Keep extra batteries charged at all times.
- Consider keeping a patch kit or can of sealant for flat tires and/or extra inner tube if wheelchair or scooter is not puncture proof.
- Keep an extra mobility device such as a cane or walker if you use one.
- Keep a portable air pump for wheelchair tires.
- If you use a seat cushion to protect your skin or maintain your balance and you must evacuate, consider keeping an extra cushion on hand.
- Communicate with neighbors who can assist you if you need to evacuate the building.
Tips for Individuals with Alzheimer’s and Related Dementia
- Do not leave the person alone. Even those who aren’t prone to wandering away may do so in unfamiliar environments or situations.
- If evacuating, help manage the change in environment by bringing a pillow and blanket or other comforting items they can hold onto.
- When at a shelter, try to stay away from exits and choose a quiet corner.
- If there is an episode of agitation, respond to the emotions being expressed. For example, say “You’re frightened and want to go home. It’s ok. I’m right here with you.”
- Several days supply of prescription medicines
- A list of all medications, dosage and any allergies
- Extra eyeglasses, contacts, hearing aids and batteries
- A backup supply of oxygen
- A list of the style and serial number of medical devices (include special instructions for operating your equipment if needed)
- Copies of insurance and Medicare cards
- Contact information for doctors, relatives or friends who should be notified if you are hurt
- Pet food, extra water, collar with ID tag, medical records and other supplies for your service or support animal
The California Foundation for Independent Living Centers Disability Disaster Access and Resources (DDAR) program provides services to people with disabilities and older adults who utilize electricity powered medical devices and assistive technology as a part of their daily living needs in order to maintain their well-being, safety and independence before, during, and after an active Public Safety Power Shutoff (PSPS), or other types of emergencies and disasters.
Individuals can apply for services on the DDAR website here: https://disabilitydisasteraccess.org/
Find the location of your local Disability Disaster Access & Resource Center here.
Connect with your local Independent Living Center here.
Save the Date! Upcoming SILC Meetings
All meetings are open to the public, with agendas posted at www.calsilc.ca.gov/meeting-notices/ 10 days prior to the scheduled meeting date.
If you would like copies of the materials being provided as a companion to items on the agenda for these meetings, or need any other information about these meetings, please contact the SILC Office Manager at Danielle@calsilc.ca.gov or (916) 263-7905 (voice) or toll free (866) 866-7452.
Next meeting on Monday September 20, 2021, from 12:00 Noon to 1:30 PM (Meets 3rd Monday of the month)
Executive Committee Meeting
Next meeting on Thursday September 23, 2021, from 9:00 AM to 10:30 AM (Meets 4th Thursday of the month)
SPIL Meaningful Data Workgroup
Next meeting on Friday September 24, 2021, from 1:00 PM to 2:30 PM (Meets 4th Friday of the month)
SPIL Long-Term Services and Supports Workgroup
Next meeting on October 6, 2021, from 10:30 AM to 12:00 noon
(Meets 1st Wednesday of the month)
Communications and Collaborations Committee
Next meeting on Friday October 8, 2021 from 10:30 AM to 12:00 Noon (Meets 2nd Friday of the month)
SPIL Funding Formula and Equity Workgroup
Next meeting on Wednesday October 13 from 10:30 AM to 12:00 Noon (Meets 2nd Wednesday of the month)
Next meeting on Wednesday October 20, 2021, from 1:00 PM to 2:30 PM (Meets 3rd Wednesday of the month)
SILC Full Council Meeting
November 9 and 10
Administration for Community Living’s (ACL) Disability Information and Access Line (DIAL)
Getting vaccinated is an important step to help protect people with disabilities from getting COVID-19. The Disability Information and Access Line (DIAL) is the only national call center that is dedicated to supporting people with disabilities and their families on issues related to COVID-19. Callers can speak with an Information Specialist in any language at 888-677-1199 from 9:00 AM to 8:00 PM ET, Monday – Friday or email DIAL@usaginganddisability.org for help and access to local resources.