Every parent wants to know their child will be taken care of when they are no longer around. For parents raising a child with special needs, that concern can be especially significant. Who will make sure their child receives the care, support, and opportunities they need? Who will step in when the parent who has always managed everything is no longer able to do so?
For families with substantial financial resources, it may seem that having enough money set aside is the answer. They have invested wisely, purchased life insurance, established trusts, and worked with financial advisors to ensure their child’s financial future is secure.
But financial security and long-term care planning are not the same thing. Money can provide opportunities, pay for services, and improve quality of life. What it cannot do on its own is ensure that a loved one receives the right care, maintains access to important benefits, or has someone prepared to make decisions and coordinate their needs.
That requires a different kind of planning.
Why Special Needs Planning Requires More Than Financial Planning
A financial advisor can help build and preserve wealth. An accountant can address tax considerations. An estate planning attorney can establish trusts and other legal protections. Each plays an important role, but families with a child with special needs often require additional coordination.
For example, a family may have a substantial investment portfolio but little understanding of how Supplemental Security Income (SSI), Medi-Cal, or other disability-related benefits work. They may also be unfamiliar with the services available through California’s Regional Centers or the importance of planning for an adult child’s future decision-making needs.
These programs are not necessarily relevant only to families experiencing financial hardship. Some benefits have financial eligibility requirements, while others are based on disability, age, or other qualifying factors.
That distinction matters because families may overlook valuable services simply because they assume their wealth makes them ineligible.
Working with an attorney who understands Special Needs Planning can help families identify potential gaps in their existing plans and coordinate their legal documents with their loved one’s long-term needs.
Some financial professionals also have specialized training in this area, including those who hold the Chartered Special Needs Consultant (ChSNC) designation. Having professionals who understand both financial planning and disability benefits can make a meaningful difference.
Two Important Things Wealth Alone Cannot Guarantee
1. Access to Community Services and Support
One of the most overlooked aspects of Special Needs Planning is access to services that support independence, community involvement, and quality of life.
Depending on an individual’s disability and circumstances, these services may include supported employment, assistance with daily living, transportation, respite care, and other community-based programs.
In California, the Department of Developmental Services oversees a statewide system of Regional Centers that coordinate services for eligible individuals with developmental disabilities. Importantly, most Regional Center services are available without regard to a family’s income or wealth.
Other services, including certain in-home care and medical supports, may be available through Medi-Cal or other public benefit programs and have different eligibility requirements.
Although families can privately pay for many types of care, financial resources do not guarantee immediate access to every specialized service or publicly funded program. Availability, eligibility requirements, and service coordination still matter.
The earlier families understand which programs may benefit their loved one, the better positioned they are to plan for future care.
2. Social Security Benefits Based on a Parent’s Work History
Another frequently overlooked benefit is Childhood Disability Benefits (CDB), commonly called Disabled Adult Child (DAC) benefits.
Unlike SSI, these benefits are not based on the adult child’s financial resources. Instead, they are based on a parent’s Social Security earnings record.
An adult child whose disability began before age 22 may qualify when a parent begins receiving Social Security retirement or disability benefits or dies, provided the other eligibility requirements are satisfied.
These benefits can provide an important source of ongoing income. They may also eventually provide access to Medicare, generally after the applicable waiting period.
Families sometimes assume that because their adult child has financial support through a trust or other family resources, Social Security benefits are unnecessary or unavailable. That assumption can result in missed opportunities and potentially lost benefits.
The Social Security Administration provides additional information about eligibility for adult children whose disabilities began before age 22.
Why Reviewing Your Plan Matters Now
Public benefit rules change, sometimes significantly. Even a carefully prepared estate plan may need to be reviewed as laws, financial circumstances, and a beneficiary’s needs evolve.
For example, beginning January 1, 2026, California reinstated asset limits for certain Medi-Cal eligibility categories, including those affecting many individuals with disabilities. Families need to understand how these rules apply to their loved one’s particular benefits and circumstances.
Importantly, Medi-Cal and SSI have different financial eligibility requirements. Qualifying for one program does not necessarily mean qualifying for the other.
The California Department of Health Care Services provides information about the current Medi-Cal asset rules.
For families with significant wealth, these changes reinforce the importance of coordinating estate planning with benefits planning. An inheritance or improperly structured gift could affect eligibility for certain programs, even when the family’s intention was simply to provide additional financial security.
Getting the Special Needs Trust Right
A properly drafted Special Needs Trust is often the foundation of a comprehensive plan for a child or adult with a disability.
The purpose of the trust is to provide supplemental financial support while preserving eligibility for means-tested government benefits, when applicable.
For parents and other family members who want to leave money to a loved one with special needs, a Third-Party Special Needs Trust is often the appropriate planning tool.
This type of trust is funded with assets belonging to someone other than the beneficiary, such as a parent, grandparent, or other relative. When properly established and administered, it can provide financial support without causing the trust assets to be counted as the beneficiary’s own resources for certain public benefit programs.
Unlike a First-Party Special Needs Trust funded with the beneficiary’s own assets, a properly structured Third-Party Special Needs Trust generally is not subject to a Medi-Cal reimbursement requirement when the beneficiary dies.
However, establishing the trust is only the beginning.
The trust must be properly funded, beneficiary designations must be coordinated, and the trustee must understand how distributions can affect benefits. For example, providing cash directly to a beneficiary receiving SSI or paying certain shelter expenses can affect the beneficiary’s monthly payment.
I discussed these concerns in more detail in my article, Giving or Leaving Money to a Loved One With Special Needs: Why a Special Needs Trust Matters.
A Special Needs Trust should also be designed with flexibility in mind. The beneficiary’s needs may change substantially over time, and the trust may need to continue operating for decades.
Just as important is choosing the right person to administer it. A trustee may be responsible for managing investments, coordinating distributions, maintaining records, communicating with care providers, and understanding how the trust interacts with government benefits.
For more on this important decision, see Who Should Be the Trustee of a Third-Party Special Needs Trust?.
How ABLE Accounts Fit Into the Plan
Another valuable planning tool is an ABLE account, which stands for Achieving a Better Life Experience.
ABLE accounts allow eligible individuals with disabilities to save and use money for qualified disability-related expenses while receiving favorable tax treatment and certain protections for means-tested benefits.
In California, the program is known as CalABLE.
Beginning in 2026, eligibility expanded to individuals whose qualifying disability began before age 46, rather than the previous age limit of 26. The standard annual contribution limit for 2026 is $20,000, with additional contributions potentially available for certain working beneficiaries.
ABLE accounts can be used for a broad range of qualified expenses, including housing, transportation, education, healthcare, and other needs that support independence and quality of life.
For some families, an ABLE account can complement a Special Needs Trust by giving the beneficiary greater flexibility in paying everyday expenses without requiring a separate trustee decision for each purchase.
However, the two tools serve different purposes, and there are limits and rules governing ABLE contributions, account balances, and distributions. They should be coordinated rather than treated as interchangeable.
You can learn more about the program through CalABLE.
Planning for the Person, Not Just the Assets
One of the most important parts of Special Needs Planning has little to do with money.
A trust can explain how assets should be managed and distributed, but it cannot tell a future caregiver everything that makes a person feel safe, comfortable, and supported.
Who are their trusted caregivers? What does their daily routine look like? What activities bring them joy? Which doctors and service providers understand their needs? How do they communicate their preferences, and what helps when they become overwhelmed or distressed?
These are the details that parents often know better than anyone else.
A comprehensive plan should include written guidance documenting the person’s routines, preferences, relationships, medical information, and support needs. Often called a Letter of Intent, this information can be invaluable to the people who eventually step into a caregiving or support role.
Families should also consider what happens when a child turns 18.
In California, becoming an adult brings important legal rights, including the right to make personal, medical, and financial decisions. Depending on the individual’s abilities and circumstances, planning options may include supported decision-making agreements, powers of attorney, advance healthcare directives, or, when necessary, a limited conservatorship.
The appropriate arrangement depends on the individual, and a conservatorship should not automatically be assumed necessary simply because someone has a disability.
Does Your Current Estate Plan Address All of This?
If you already have an estate plan, that is an important starting point. But it is worth reviewing whether the plan addresses your loved one’s circumstances beyond the financial assets you intend to leave.
Consider whether the trust is properly structured, whether all beneficiary designations are coordinated, and whether the person you selected as trustee understands the responsibilities involved.
You should also review whether your loved one may qualify for benefits or services that have not been explored, whether an ABLE account would be useful, and whether arrangements are in place for future care and decision-making.
Most importantly, consider what would happen if you were suddenly unable to manage your loved one’s daily needs. Would the people stepping in know what to do, whom to contact, and how to maintain the quality of life you have worked so hard to provide?
Those are questions that should be answered while you are still here to help shape the plan.
Wealth Can Fund the Plan, But It Cannot Replace It
Having the financial resources to provide for a loved one with special needs is a tremendous advantage. But even substantial wealth cannot replace thoughtful planning, experienced guidance, and the involvement of people who understand your loved one’s unique needs.
At Cheever Law, APC, I help families create comprehensive estate plans that address not only how assets will be distributed, but also how loved ones will be protected and supported in the years ahead.
If you have a child or another loved one with special needs, I encourage you to download my free Special Needs Planning Guide to learn more about the important decisions involved.
If you already have an estate plan and are unsure whether it provides the protections your loved one needs, schedule an introductory call with Cheever Law. We can discuss your concerns and determine whether your current planning should be reviewed or updated.
Because the goal is not simply to leave your loved one enough money. It is to make sure the right people, protections, and resources are in place to support their future.