The Self-Advocate’s Guide to Disability Home Aides
Disability home aide programs are designed to help people stay out of nursing homes and in their own homes and communities. Many of our readers report that this program has (quite literally) saved their lives.
These programs are called different things in different states. They may be called “Home and Community Based Care”, “Medicaid Waiver Programs”, “Medicaid Long Term Care” or “In Home Support Services” or “IHSS” or something else in your state.
About Home Aide Programs
Applying
- How to Find State Home Aide Programs
- How To Apply for State Home Aide Programs
- How to Find Other Types of Caregiver Programs
Success Stories
- Teri Gets Approved for a Home Aide for Lyme
- Dianthus Gets Approved for a Home Aide for POTs
- Juniper Gets Approved for a Home Aide for ME/CFS
- Dianella Gets Denied… and Then Gets Approved!
- Borgainvilla Gets Approved for MCAS
- “How I Got Approved for a Home Aide”
Good Secrets!
Live In Caregivers
Affordable Housing with Home Aides
In some affordable housing programs, your caregiver can be given free rent:
- Three Different Ways to Get Home Aides
- How to Request a Live-In Aide
- Meet Jane and Sally (Rent Example)
- How to Exclude Aide Income
- How Rent and Bedrooms Work
- How to Apply For Affordable Housing
- New Changes to Voucher Policies for Aides
- Applying for Housing if You Have a Caregiver
- Lilac upgrades both her care and housing
Increasing Your Hours
Reader’s tips, guides and stories:
- Guide to Protecting and Increasing Home Care Hours
- Margaret’s Appeal for 48 Hours Per Week
- Bluebell’s Care Plan for 40 Hours Per Week
- Borgainvilla’s Application for 57 Hours Per Week
- Lilac’s Doctor’s Letter for 49 Hours
- Lilac’s Care Reports for 56 Hours
- Lilac’s Care Q & A for 49 Hours
- Lavana Social Worker Letter for 85 Hours
- Lavana Nurse Letter for 85 Hours
- Lavana’s Care Plan for 85 Hours
- 21 Questions To Ask Yourself About Personal Care
- How to Have an Assessment Interview
These guides have useful info even if you are in other states:
- Criteria for Waiver Programs (all states)
- Guide to Home Care Hours in Texas
- California: Challenge Reductions or Terminations
- California: Prepare for a Hearing
- California: Right to Request a Home Hearing
- Washington Law Help Care Assessment Guide
- Sample Policies for Medicaid Waivers in WA, VA, OR, NE, MI, and CO
Finances
- How to Apply When You Have Too Much Money
- How to Eliminate Share of Cost, Patient Pay and Spend Downs
IHSS (California)
- How I Got Approved for 228 Hours Per Month
- How I Got Approved for Protective Supervision
- Tips from Parents – Protective Supervision
- How to Exclude IHSS Income from Taxes
- How Can I Get My IHSS Income Excluded from SSI? Medi-cal? CalFresh? Taxes? HUD? Housing Vouchers?
Hiring Great Aides
- How to Decide: Agency Care vs Self-Directed Care
- Lilac’s Caregiver Ad
- Lilac’s Complete Job Description
- Lilac Seriously Upgrades
- Alstroemeria’s Thoughtful Caregiver Ad
- Alstroemeria’s Script to Interview Caregivers
- Alstroemeria Gets References
- Alstroemeria Onboards New Caregivers
- Do You Hire Your Own Aides? Or Use an Agency?
- Where to Find Home Aides
- How To Ask A Friend To Be Your Home Aide
- Writing Ads for Home Aides
- States That Allow Spouses as Aides
- Directory to Find Aides – for clients of PPL Pubic Partnerships
- After Hiring: Ricky’s Caregiver Instructions
Super Helpful Guides
- State by State Description of Waiver Programs – Ignore where it says senior. Most of these programs are available to people with disabilities of any age. Important: Scroll down!
- State by State List of More Waiver Programs – Ignore where it says kids. Most of these programs are available to people with disabilities of any age.
Get Support and Help
- Area Agency on Aging – Call them even if you are young!
- Centers for Independent Living – Run by people with disabilities
- Disability Rights Organizations – Legal issues and problems
- More resources listed by state below
Join Facebook Groups
Groups that often include discussions about waivers and home care:
- Medicaid Waivers
- Self-Directed Care
- SSI For Children
- Ask Disabled Folks
- Social Service Connections for Lyme
- Support Group for Severe CFS/ME
- How to Get On (Facebook page)
- How to Get On (Twitter)
State Facebook Groups & Resources
- Texas – Facebook group
- Texas – Facebook group for parents
- Texas Medicaid Waivers – Webpage
- California – Facebook group
- California – Facebook group
- California – Facebook group
- Disability Rights California – Toolkit
- California IHSS Protective Supervision – Resource
- California: How I Got Approved for 228 Hours Per Month in IHSS
- Florida: Advocates Guide to Medicaid Waivers
- Ohio – Facebook group
- Ohio – Facebook group
- Ohio – Facebook group for providers
- Ohio – Facebook group
- Ohio – Facebook group about home nurses
- Minnesota – Facebook group
- Minnesota Disability Hub – Organization
- Minnesota Examples of Supports and Services – Resource
- Minnesota – Roommate Matching for Aides
- Virginia – Facebook group
- Virginia Moms In Motion – Organization
- Virginia Sample policy – Resource
- Georgia – Facebook group
- Georgia – Facebook group
- Washington State – Facebook group
- Seattle – queer/trans caregivers and people seeking caregivers
- Washington State Community Living Connections – Organization
- Washington Law Help – Toolkit
- New York – Facebook group
- New York Independence Care Systems – Organization (NYC)
- New York Concepts of Independence – Organization
- New York Evelyn Frank Legal Resources – Program
- New York $5,000 to assist with moving expenses in certain situations.
- New York ICSNY member book – Includes lists of services and benefits
- Tennessee – for children
- Pennsylvania United Disability Services – Organization
Become an Activist
ADAPT advocates do amazing work saving medicaid and working to protect and expand Medicaid Waiver programs. “Our Homes Not Nursing Homes.”
More Things That May Help You Out
How to Get On 
I honestly have never seen so much clear, good advice and explanations to so many things. Covers issues I’ve been trying to figure out for 18 months+ & brick walls.
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You give a great deal of bonus in living the best life you can… Even in bed. I want to Empower those who are bedridden so they can live the best life they can….. But there is little help or really good role models to help. I believe this site is one. Thank you
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I was distressed to find that my state (NC) doesn’t have anything available to me except skilled nursing.
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I just discovered this very old comment that got lost. If you are still looking for a home aide, the program in NC is called Community Alternative Program for Disabled Adults (CAP/DA).
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