Blog

August 30, 2024

Navigating Housing Challenges for Special Needs Families in California

Housing Challenges Rising for Special Needs Families

When you think about what truly defines the quality of life for special needs beneficiaries, housing inevitably comes to the forefront—especially in a state like California. This is something I witness almost every day in my work, and it’s a frequent topic of conversation among parents who are deeply concerned about securing the best future for their children. The hurdles to finding and maintaining suitable housing are daunting, compounded by California’s high living costs and the limited financial support available through programs like Supplemental Security Income/State Supplementary Payment (SSI/SSP).

The Financial Reality of SSI/SSP Grants

SSI/SSP grants are a crucial lifeline for over a million low-income seniors and people with disabilities in California. They’re intended to help cover basic needs, including housing. But the harsh reality is that these grants are often not enough to provide a comfortable or secure life in this state.

As of the most recent data, the maximum monthly grant for an individual in California is about $1182.94, made up of $943 from federal SSI and $239.94 from the state SSP. In a state where the Fair Market Rent (FMR) for a studio apartment exceeds half of that grant in all 58 counties, it’s clear that these amounts fall far short of what’s needed. In many counties, the rent for a modest studio apartment can even surpass the entire SSI/SSP grant, leaving recipients in a difficult position, often struggling just to keep a roof over their heads. In my Los Angeles, CA location, the average one bedroom apartment cost is over $2100 monthly!

Helen and Michael: A Story That Hits Home

Let me introduce you to Helen and her son Michael. Helen is a widowed mother, and Michael is her adult son with an intellectual disability. They live together in the family home—a spacious, four-bedroom house with a large yard and a swimming pool. This is the home where Michael grew up, surrounded by love and care. Now it’s just the two of them.

Helen has always envisioned that Michael would continue living in their home after she’s gone. It’s where he feels safe and comfortable, and she wants to preserve that sense of security for him. Michael spends his days at a program funded by the Regional Center, and Helen receives a small amount of assistance through In-Home Support Services (IHSS) to help with his care.

But the situation is more complex than it seems. Helen hasn’t discussed with Michael’s Regional Center service coordinator whether supported living services or independent living services would be available after she’s no longer able to care for Michael. She’s also unsure whether Michael would need full-time supportive living services, or if independent living services might suffice. Financially, they live on Helen’s Social Security, Michael’s Social Security from his deceased father, and the payments from IHSS. Even though they live modestly, they still have to dip into Helen’s savings—about $1000 a month—to cover their living expenses, including maintaining the house and yard.

Michael’s circle of support is small—just a neighbor and Helen’s sister who lives out of state. The house itself, while cherished, is aging and has deferred maintenance. The roof is 40 years old and has started leaking, the plumbing has had problems, and Helen recently spent a significant portion of her savings on major repairs. These are all issues that Michael may not be equipped to handle on his own.

The question that looms over them is this: Can Michael realistically stay in the home after Helen is gone? While the emotional attachment to the house is strong, the financial realities are sobering. If all of Helen’s savings are used to maintain the home—covering insurance, property taxes, and repairs—will there be enough money to last Michael’s lifetime? Unfortunately, the answer is probably no.

Planning for the Future: Steps Parents Should Consider

As someone who has worked with many families facing similar challenges, I want to stress that I’m not advocating for selling the family home outright. What I do encourage is planning ahead, making informed decisions while you’re still here to do so. It’s natural to want to keep things familiar and comfortable for your loved one with special needs, but sometimes the best choice isn’t the easiest one. Here are some steps you might consider:

Talk to the Regional Center Service Coordinator: It’s essential to have an open discussion about whether supported living services or independent living services would be available and suitable for your loved one. Understanding your options now can help you plan for the future and avoid any surprises.
Consider Room Sharing: If your loved one is open to it, renting out rooms to other Regional Center consumers might be an option. The Regional Center might help coordinate this, sharing resources in a way that makes the arrangement work for everyone involved.
Explore Housing Funded by the Regional Center: Ask about the types of housing the Regional Center would be willing to fund after you’re gone. It’s important to know how quickly they can step in and what kind of case management they can offer.
Look into Group Homes: If a group home seems like a more appropriate option, ask for recommendations and consider getting on a waitlist for the best ones. This doesn’t mean you’re committing to anything right now, but it’s good to be prepared.
Evaluate Financial Sustainability: Take a realistic look at whether the funds you leave behind will be enough to maintain the family home. In many cases, selling the property and using the proceeds to secure long-term care in a group home or similar setting may be the more sustainable choice. Alternatively, it may be more financially viable to use the proceeds of the sale of the home to rent a smaller, less expensive accommodation.

The Bigger Picture: California’s Housing Crisis

The struggles faced by Helen and Michael are just one example of a much larger issue—California’s ongoing housing crisis. The shortage of affordable housing disproportionately affects low-income individuals and those who rely on fixed incomes like SSI/SSP grants. This lack of affordable options has contributed significantly to the state’s homelessness crisis, which is one of the most pressing social issues we face today.

In conclusion, while Special Needs Trusts (SNTs) are a vital tool for supporting individuals with disabilities, managing them in a state like California requires careful planning. The high cost of living here means that trustees need to be strategic in ensuring that beneficiaries maintain a good quality of life without losing critical benefits.

For parents and trustees, it’s all about exploring every option and making informed decisions. By planning ahead and considering all possibilities, we can help ensure that loved ones like Michael receive the care and support they need, even when we’re no longer around.

References:

Author
Lee Ann Hitchman, M.B.A., CLPF
California Licensed Professional Fiduciary
Founding and Senior Partner since 2005