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Advocacy & Legislative Info

Advocacy Update

InSpirit has a long history of advocating for its recipients with quadriplegia because almost all of them live close to the poverty line, entirely and solely dependent upon earned benefits from the government. Dictating that existence is the California State Department of Finance, with rules asserting that our recipients on Medi-Cal, SSI, IHSS and SSDI must maintain abnormally low levels of assets and income in order to remain eligible for those earned benefits.

Despite unsuccessful years of attempting to raise those limits, InSpirit will persevere in assuring that its recipients attain the highest level of dignity by continuing to advocate on their behalf.

Medicare and What You are Entitled to.

Medicare home health coverage is not just a short-term, acute care benefit. Unfortunately, unfair coverage denials still occur on the basis that the individual was not improving or did not demonstrate a potential for improvement (known as the “Improvement Standard”). Jimmo v. Sebelius, a nationwide class-action lawsuit, was brought on behalf of Medicare beneficiaries who received care in skilled nursing facilities, home health care, and outpatient therapy settings, but who were denied Medicare coverage based on this Improvement Standard. The Jimmo Settlement clarified that improvement is not required to obtain Medicare coverage.

Medicare law authorizes up to 28 to 35 hours a week of home health aide personal hands-on care and nursing services combined, as well as therapies.

There are three requirements in order to qualify for your home health aide benefits.

  1. You must be under the Care of a Physician or Allowed Practitioner (who certifies/recertifies patient's eligibility, and orders home health services). This practitioner is to review a new plan every 60 days.

  2. Confined to Home. This means you are unable to leave without the assistance of another individual or a supportive device. Homebound does not mean that you are bed-bound.

  3. You must need & receive at least One Skilled Service. Intermittent Skilled Nursing, (less than daily visits, but at lease once every 60 days), Physical Therapy or Speech Language.

    • Then Physician would recommend the need for a home health aide personal (this does not need to be skilled, but provided with a Medicare-certified home health agency. Again, this process must be done every 60 days.

For more information and details of what Confined to Home means, visit: 

Challenging Medicare’s Home Care Coverage Laws

In our continued effort to advocate on behalf of people with quadriplegia, we are challenging the roadblocks and red tape so that our recipients — of any age— receive the maximum number of hours of home health aide services through Medicare that they qualify for. Read about Colin Campbell’s efforts to get Medicare to pay for home health care services that he is entitled to receive.

Colin Campbell was diagnosed with Lou Gehrig's disease (ALS). Photo Credit: Heidi de Marco/Kaiser Health News

Tell Congress: Please Support the SSI Savings Penalty Elimination Act (S.4102)!

The Supplemental Security Income (SSI) currently provides critical supports to nearly 8 million adults and children with disabilities and older Americans. But outdated rules prevent people from saving money—forcing them to live in poverty. Right now, people who receive SSI or SSDI can only have $2,000 in assets. Married couples can only have $3,000. These limits have not been updated since 1989 and mean that people cannot save for the future and for emergencies.

The SSI Savings Penalty Elimination Act would raise the amount of savings a person on SSI or SSDI could keep for the first time in over thirty years. The bill raises SSI asset limits from $2,000 to $10,000 for individuals and from $3,000 to $20,000 for married couples. Everyone deserves to live with dignity and be able to save for emergencies. Raising these asset limits would significantly improve the lives of people with disabilities who receive SSI and SSDI.


TAKE ACTION: Urge your U.S. Senators to support people with disabilities by co-sponsoring the bipartisan SSI Savings Penalty Elimination Act (S.4102).

Current IHSS Issues
New Federal Law Restricts IHSS Recipient Movement and Endangers their Care Providers.

California recently made changes to the current Electronic Visit Verification (EVV) system to comply with federal law. EVV systems are essentially government tracking systems that affect both seniors and people with disabilities who have IHSS/WPCS providers who do not live with them. These changes in the law will require that recipients stay in or nearby their residences in order to qualify for federal funding for IHSS. These rules take effect on July 1, 2023.


With this change, California is attempting to alleviate fraud and other inefficiencies. However, the EVV system essentially puts seniors and people with disabilities under house arrest. Providers who do not live with their recipient will be required to check in at the beginning of the shift and check out when it ends. Their movements will be traced via “geo-tracking”, thus restricting the caregiver’s ability to accompany a recipient when they chose to travel outside a predetermined radius. 


InSpirit, along with the The National Council on Independent Living oppose the new federal regulation because of a number of serious concerns:

  • The invasion of both the recipient’s right to privacy and freedom of movement due to geo-tracking (GPS).

  • Private home care agencies gain more power, resulting in a loss of federal funding for IHSS.

  • Deterioration in the relationship between disabled recipients and their home care workers.

  • Erosion in the already limited number of available caregivers available due to the increase of detailed accountability required and the administrative tasks that accompany the role.

  • Lastly, poor cell coverage or other technical glitches can cause issues with accurate clocking in and out.


Here is NCIL’s position:


We encourage people to get in contact with state legislators and others who have a stake in how EVV will impact their lives. While the new system which eliminates paper timesheets may benefit some, advocates are alarmed it may undermine the civil rights of privacy and freedom of movement that the disability community has fought for over many decades. 

Previous Updates
IRS Tax Exemption for Live-in IHSS and/or Waiver Personal Care Services
The IRS recently issued a notice that the wages received by IHSS and WPCS providers
are not considered part of the gross income for purposes of federal income tax (FIT). According to the California Franchise Tax Board, this will also apply for California State personal income tax.

To register for this tax exclusion, providers must complete SOC Form 2298, Live-in Self-Certification Form. The wage exclusion will also automatically exclude state income tax. You will not need to file a separate certification form for the state. The form may be found on the California Department of Social Services Please direct questions regarding the SOC Form 2298 to CDSS at 916-551-1011.

Medi-Cal and Share of Cost
If you cannot qualify for free Medi-Cal or Medi-Cal's Working Disabled Program, you may be able to get Medi-Cal through the Aged, Blind, & Disabled - Medically Needy (ABD–MN) program. However, you would have to pay a share of cost. A share of cost is a certain amount of money you must spend on medical care each month before Medi-Cal begins to pay for services.

Guidelines and general information on qualifying for Medi-Cal and Medi-Cal share of cost, although current income limits would have to be verified.

Click for More Information

Resource and Advocacy Information


The United Spinal Association is dedicated to building an inclusive world that empowers people with spinal cord injuries and disorders in reaching their full potential. Sign up here for free membership and access to all of the resources and support available through United Spinal Association.

Lobbyists Keep Nursing Homes Healthy, Disabled Patients Not so Much
Read San Diego Free Press article at:
Press Release

End The Institutional Bias for Long Term Care
If, like millions of Americans, you need personal assistance and run out of money, you may be eligible for long-term care under Medicaid. But in order to get those safety net benefits, you may have no choice but to move into a nursing home. This is true even though most people prefer to stay at home and most of the institutions themselves would rather be providing more lucrative post-acute care and rehabilitation.

Read this article

Differences in home care funding in the US compares to other developed nations
The two most important numbers in American health care

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