Resources To Learn More
If you are interested in learning more about how services and supports are offered for people who have developmental and intellectual disabilities in the State of California, here are some resources we recommend reading about.
These are not endorsements, but provided for your education. Some have email lists for newsletters, meetings, and advisory boards you can join.
Service Types - Whether you’re receiving services, are a current or prospective services provider, a family or community member who cares about someone receiving services, we encourage you to learn about that types of services that are available in California. Every state has its own system for providing services. Since we are located in California, this is the system we are most familiar with. If you live in another state, we encourage you to research what’s available near you.
Department of Developmental Services
This legislation provides the legal basis for rights for people who live in California and have developmental or intellectual disabilities to receive services and supports in their communities.
Disability Rights California Guidebook
Department of Developmental Services (DDS) – A state agency that is "Dedicated to providing services and supports for Californians with intellectual and developmental disabilities and their families to live the life of their choosing in their communities.”
State Council on Developmental Disabilities - "The California State Council on Developmental Disabilities (SCDD) is established by state and federal law as an independent state agency to ensure that people with intellectual and/or developmental disabilities (I/DD) and their families receive the services and supports they need."
The Regional Centers System (California only) - "DDS oversees the coordination and delivery of services for Californians with developmental disabilities through a statewide network of 21 community-based, non-profit agencies known as regional centers. Regional centers provide assessments, determine eligibility for services, and offer case management services. Regional centers also develop, purchase, and coordinate the services in each person’s Individual Program Plan."
Find the regional center in your area and learn more about services and opportunities.
California Department of Rehabilitation - "(DOR) works in partnership with consumers and other stakeholders to provide services and advocacy resulting in employment, independent living, and equality for individuals with disabilities."
Financial Planning:
Financial planning for people who have special needs is complex. The information provided here is not meant as a substitute for consulting with professionals, but is provided for your information so that you can learn about some of the instruments that are available. We strongly recommend consulting with a financial services professional who has special training in these areas.
Special Needs Trust – this financial instrument can be set up for a person who has a disability so that they may have financial assets without jeopardizing their ability to qualify for public benefits such as Social Security and Medicaid. The rules are complex and have to be done correctly. We recommend that you consult with an attorney or financial professional if you are interested in setting up a Special Needs Trust.
Look up information specific to your state.
529A ABLE Accounts – these accounts allow for savings for a person who has a disability, without jeopardizing eligibility for public benefits like Social Security and Medicaid, similar to a 529 savings accounts for education. We recommend that you consult with a financial professional if you are interested in setting up a 529A ABLE account.
Social Security Benefits – there are a range of Social Security Benefits available for people who have disabilities.
Medicaid, Medicare, and state Medical benefits – All states have different delivery systems for providing healthcare and other services to people who have disabilities. We encourage you to read up about your state’s process. Medicaid and the Medicaid Waiver program are often part of the funding for medical insurance and other types of services.
Down Syndrome and Alzheimer’s Dementia
Many people who have Down Syndrome will likely develop Alzheimer’s Dementia. The link is not yet fully understood, and ongoing medical research is being conducted. If you have Down Syndrome or have a relative or person you support who has it, it’s important to know more about it. Here are some resources:
National Task Group on Intellectual Disabilities and Dementia
National Down Syndrome Society
The Advocate Medical Group Adult Down Syndrome Center (ADSC)
Aging with Down Syndrome Podcast
Emergency Preparedness:
People who have disabilities may need extra help preparing for and responding to emergencies. Thinking ahead is important. Here are some resources and ideas that we hope will be helpful.
We encourage you to get help from professionals in this field, and to get involved in planning efforts in your community.
Some suggestions:
* Attend public meetings about disaster preparedness.
* Ask local elected officials if there are plans in place to assist people who have disabilities with evacuation in case of emergency and if local shelters have adequate accessibility features.
* Request that people who have disabilities and their families and service providers be included in emergency planning processes.
* Take CERT and Red Cross First Aid/CPR – find out if your community has a CERT (Community Emergency Response Team) training program, or if the local Red Cross chapter has classes. Learn how you can be part of the solution instead of a victim in need. * * Learn first aid and disaster survival skills. You'll be glad you did!
* Sign up to receive emergency alert messages from your local municipality.
Here’s an example: Ready Napa County
Sign Up For California's Emergency Alert Message System.
Go to your County's website to find and sign up for local alerts.
Learn more about preparedness and accessibility here:
Preparedness for People with Disabilities
The CDC's Emergency Preparedness For People With Disabilities
Many power companies offer programs to help customers in their areas. Check for resources in your area.
Here is some information for parts of California where Pacific Gas & Electric is the power provider. On this page, you can sign up for outage/safety alerts by submitting your address and contact information and learn more about financial assistance programs for people who have medical needs and rely on power, or who qualify for reduced rates based on income.
PG&E Emergency Planning & Preparedness for Independent Living Centers
PG&E Electrical Safety After Disasters
Medical Resources:
We are not medical professionals. Always consult with medical professionals about medical care. We are providing some resources that we have found helpful, in the hopes that these may help you better prepare for appointments, and to learn how to maximize benefit when interacting with medical professionals.
Medical, Dental, Vision Appointment resources:
Toolkit for Primary Care Providers
My Heath Passport (also available in Spanish)
My Health Passport is a fantastic document! Fill one out and make sure it goes with you to medical appointments and hospital stays, or is scanned in to medical records for easy access by healthcare providers.
As an organization, we have years of experience as both family members and service providers for people who have disabilities. We’ve spent lots of time accompanying people to medical appointments and hospital stays. For the most part, we’ve been very impressed by the kind, thorough care everyone has received. We’ve also been very aware of our responsibility to help medical professionals understand what each person is like when they are not sick.
Remember – we’re all on the same team. Focus on positive outcomes and be as helpful as possible. Advance planning also helps.
End of Life: Issues, Planning, & Resources
Whether we feel comfortable talking about it or not, the truth is, we’re all going to die someday. Planning can bring back a sense of control over one aspect of this reality, and can ensure that our wishes are carried out. It can also relieve one layer of stress at an otherwise heavy time, by knowing that plans are in place, and it relieves loved ones from having to guess as to what someone would’ve wanted if the conversations and plans had taken shape earlier.
Here are some resources that we hope you will find helpful in starting conversations, and considering what’s important -
Coalition For Compassionate Care Resources
Book recommendation:
Being Mortal, by Dr. Atul Gawande
Hospice Care –
Familiarize yourself with what types of hospice care are offered in your community. Learn about criteria for entering hospice. Primary care physicians are a good place to start, as they often are involved in the assessment and referral process. Many patients and their families express that they wish they’d entered the hospice program sooner, as it provides many layers of support for the person enrolled and their family and caregivers. As an organization, we were able to support residents in receiving hospice services in their home, if that is what they wanted for end of life care. It can be complex navigating the process if a person lives in a licensed residential setting (a home licensed by the State of California Department of Social Services, Community Care Licensing) but it is possible and residents have the right to make these choices for themselves. People who receive Regional Center services are entitled to services and support around hospice and end of life care in any residential setting.
If you are having difficulty navigating this subject, contact us! We may be able to provide advice based on our years of experience and professional training.