How Proposition 19 Threatens Disabled Adult Children and the Families Who Love Them

 

The Broken Promise of Home

For twenty-six years, Trudy, a single mother for nearly 30 years, carefully planned for her daughter Lauren's future. Lauren, now 41, has autism and an intellectual disability that requires 24/7 supports, and receives $1,300 per month in SSDI benefits based on Disabled Adult Child Benefits. Trudy's three-bedroom condo in Saratoga, purchased for $430,000 in January, 1998, is now worth $2 million. Under Proposition 13, her property taxes have remained manageable at roughly $9,000 per year. The plan was simple: leave Lauren the family home, the place where she grew up, where she feels safe, and where local services support her community-based living. At 70 years old, if Trudy lives another 10-15 years, she will have spent nearly four decades ensuring Lauren has a stable foundation for life, while the impact of the impossible tax burden continues to rise. 

But California's Proposition 19, passed in 2020 and effective February 16, 2021, has shattered that dream.

What Proposition 19 Really Means for Disabled Adult Children

Proposition 19 fundamentally changed California's inheritance laws, requiring that children who inherit their parents' home must live in it as their primary residence to avoid a massive property tax reassessment. Even when they do move in, they only receive partial protection: the property can still be reassessed if the difference between the home's market value and its original assessed value exceeds $1 million (adjusted annually for inflation to $1,044,586 in 2025).

For families like Trudy's, and every family, this creates an impossible situation. Lauren's inherited condo would be reassessed from the current property tax base of roughly $9,000 per year to approximately $22,000 annually—an amount that would consume her entire SSDI income and then some.

While it's easier to ignore it, try this calculator that helps to figure out what your child would have to pay when they inherit the impact of Prop 19, and that exemption? It's only if the child lives in the home.
https://claude.ai/public/artifacts/5834099d-df2a-49db-aa34-790b8f95d3e2 

The Devastating Math

Consider the financial reality for disabled adult children inheriting California homes:

• SSDI Income: Most disabled adult children receive between $800-$1,500 monthly in benefits
• New Property Taxes: In expensive areas, reassessed properties often face $15,000-$30,000 annual tax bills
• Living Expenses: Food, utilities, healthcare, and support services consume most remaining income

Even with the $1 million exclusion, many California homes exceed this protection, leaving disabled heirs facing partial or complete reassessment. In Trudy's case, her condo's value of $2.2 million minus the original assessment of $470,000 equals $1.73 million—far exceeding the protected amount.

The Service Network Catastrophe

The impact extends beyond individual families. Disabled adults often depend on carefully constructed networks of support services, medical providers, and community programs that took decades to establish. When property taxes force these individuals to sell and move, they lose access to familiar support systems and must rebuild their lives in unfamiliar communities, assuming services are even available elsewhere.

Dr. Sarah Chen, a developmental disabilities specialist, explains: "These service networks are not interchangeable. A 41-year-old with autism who has worked with the same behavioral therapist for fifteen years can't simply transfer to a new provider without significant regression. For individuals requiring 24/7 supports, disrupting these carefully structured relationships can be devastating."

The Generational Wealth Transfer Crisis

Proposition 19 has made it "financially untenable for children to hold onto inherited properties" in many cases, forcing sales that break the generational transfer of wealth that families worked decades to build. This disproportionately affects families with disabled children who were counting on stable housing as their primary inheritance strategy.

Unlike typical heirs who might choose to sell and invest proceeds elsewhere, disabled adult children often cannot make such complex financial decisions independently. They depend on the stability and familiarity of the family home—not just as shelter, but as the foundation for their entire support system.

When Parents Become Estate Planners by Necessity

Desperate families are now exploring complex workarounds:

• Irrevocable trusts: Expensive to establish and maintain, with uncertain outcomes
• Property gifts before death: Triggers income tax consequences and potential loss of stepped-up basis
• Family LLCs: Costly structures that assessors may challenge as "step transactions"

None of these solutions are guaranteed, and all require significant legal and financial resources that many families lack.

The Return of Burden to the State

The cruel irony of Proposition 19 is that it undermines the very independence it claims to support. When disabled adult children lose their family homes, they often require increased state services:

• Emergency housing assistance
• Intensive case management during transitions
• Crisis intervention services
• Medicaid funding for institutional care when community-based support fails

Parents who spent forty years planning to provide housing stability for their disabled children now watch helplessly as state policy forces a return to dependency. For individuals requiring 24/7 supports like Lauren, the loss of familiar surroundings and established care networks can trigger behavioral crises that demand intensive, costly interventions.

Neighborhoods for the Wealthy Only

The reassessment requirements are "potentially leading to huge tax increases" that make it impossible for middle-class families to maintain inherited properties. In desirable areas like Palo Alto, Marin County, and West Los Angeles, entire neighborhoods risk becoming exclusive enclaves for the ultra-wealthy—the only ones who can afford the reassessed property taxes.

This gentrification-by-taxation particularly harms disabled individuals, who often cannot easily relocate due to their dependence on established service providers and familiar environments. Saratoga's exceptional schools and specialized programs that families spent decades accessing become unreachable for those forced to sell.

What Families Can Do

While options are limited, families should consider:

Immediate Actions:

• Consult with both estate planning attorneys and disability advocates
• Document the disabled child's need for stable housing and continuity of 24/7 supports in their Individual Program Plan
• Explore available county and state housing programs as backup options
• Consider whether other family members could move in and qualify for the exemption

Advocacy Efforts:

• Contact state legislators about creating specific exemptions for disabled heirs
• Support organizations working to modify Proposition 19
• Document the real-world impact on disabled individuals and their families

Financial Planning:

• Calculate the exact tax impact using current assessments and market values
• Explore reverse mortgages or other financing options for parents
• Consider setting aside funds specifically for property tax increases

A Policy That Demands Revision

Proposition 19 was sold to voters as protecting seniors and disaster victims while closing "loopholes" for the wealthy. But its primary victims are not rich families avoiding taxes—they're disabled adults losing their childhood homes and the support systems that make community-based living possible, and countless other heirs who will lose their family homes to crushing tax bills.

Community-based living represents decades of policy progress, moving away from institutional care toward supporting people with disabilities in their own homes and communities. This approach recognizes that people thrive when they can maintain familiar routines, relationships, and support networks. Proposition 19 threatens to reverse this progress, forcing families back toward institutional solutions when community-based supports become financially impossible to maintain.

The harm extends far beyond families with disabled members. Any California family that purchased a home decades ago and hoped to pass it down now faces the reality that their heirs may be unable to afford the reassessed property taxes. Teachers, firefighters, nurses, and other working families who built their lives and wealth through homeownership find their children priced out of their own inheritance. The policy effectively mandates that only the wealthy can maintain generational homeownership in California's desirable communities.

The $1 million exclusion, perhaps generous in 1980, is meaningless in today's California housing market. Even with annual inflation adjustments bringing the exclusion to over $1 million in 2025, it fails to protect working families in most of California's desirable communities.

The Human Cost

Behind every property tax reassessment notice is a family facing an impossible choice: drain their disabled child's limited resources paying crushing property taxes, or abandon the home and community where their child has built a life.

Lauren still doesn't understand why her mother seems worried all the time now, or why they keep talking about "moving somewhere cheaper." At 41, the Saratoga condo isn't just her home—it's her entire world. The familiar route to her job at the local community center, her weekly walks downtown, her longtime neighbors who check on her, her supporters who understand her specific needs for 24/7 support structure, t—all of it centered on that condo her mother bought twenty-six years ago.

Proposition 19 threatens to destroy that world, replacing careful family planning with impossible financial burdens. For California's disabled adults and their families, this isn't just bad policy—it's a betrayal of the promise that with enough love, planning, and hard work, a parent can secure their vulnerable child's future.

The question now is whether California's lawmakers will recognize this injustice and act to protect our state's most vulnerable citizens before it's too late.

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The author encourages readers to contact their state legislators and the State Board of Equalization to advocate for specific protections for disabled adult children inheriting family homes. Every family's situation is unique, and this article should not substitute for professional legal and financial advice.

Gas? What Gas? The Daily Fear of Every Aging Parent of a Child with a Disability

 

What happens when turning 70 doesn't feel like reaching a milestone, but like running out of time?

Yesterday there was a gas leak at my daughter's program, on my 70th birthday. Construction had pierced a pipe, the shut-off valve was stuck open, and everyone had to evacuate immediately. My 41-year-old daughter was playing vegetable bingo—something she needed to complete because that's how her mind works. When staff tried to get her to leave, she resisted. She had to be physically carried out, traumatized and unaware of the danger she was in.

Later, I was able to help her understand that the people who evacuated her may have "saved her life," and she thanked them. But I lack faith that in a repeat evacuation, the same thing wouldn't happen. If there's ever a need to take cover, seek shelter, flee danger—this will be a challenge for whoever is supporting her.

This is my constant, daily worry crystallized into one terrifying afternoon.

I've been thinking about this conversation we need to have—those of us who are aging parents of children with disabilities. You know the one. The conversation about how every birthday feels different when your 41-year-old daughter still needs you to be her voice, her solace, and her greatest advocate—when she needs you 100%.

At 70, I should probably be thinking about hobbies or grabbing a bag and taking off on a month-long vacation. I watch my friends plan cruise itineraries and spontaneous weekend trips, complaining about having "too much time on their hands." They talk about finally being free to follow their own schedules, to sleep in, to say yes or no to social invitations based purely on their own desires. That freedom feels as foreign to me as flying to Mars. Instead, I wake up most mornings with the same thought that's been nagging at me for years: What happens to my 41-year-old daughter when I'm gone?

She loves American Girl dolls, anything Disney, and shopping trips that make her eyes sparkle with joy. She needs me to be her voice when the world doesn't understand her needs, her solace when things don't go as planned, and her greatest advocate when systems fail her. She needs me 100%. And at 70, that complete dependency feels both precious and terrifying.

This Isn't the Kind of Mortality Awareness They Study

You've probably read about how thinking about death can actually be good for you. Researchers have whole theories about "mortality salience"—how confronting our own mortality makes us more grateful, more focused on what matters, better at making healthy choices. Buddhist monks meditate on death daily and report feeling more alive because of it.

That sounds lovely, doesn't it? Philosophical. Enlightening.

But here's what those studies don't capture: the particular weight that sits on your chest when you're 70 and your 41-year-old child still needs you to advocate for them at every doctor's appointment, when they still can't navigate the world's bureaucracies alone, when they light up when you walk in the room like you're their whole universe.

This isn't abstract mortality awareness. This is lying awake at 3 AM doing math—how many years do I realistically have left? How long before I can't drive them to appointments? How many more times will I be able to fight for their services before I'm too old to be taken seriously?

The Math That Keeps Us Up at Night

When you're our age with a child who needs us, mortality isn't a meditation—it's a deadline. And unlike other deadlines, this one comes with devastating consequences for the person you love most if you don't get everything sorted in time.

I find myself thinking about death differently than my friends whose children are independent. They might contemplate their legacy, their unfulfilled dreams, their spiritual readiness. Me? I'm making lists. Who will remember that my daughter gets agitated in crowds? Who will notice if she's ill? Who will fight for her when the Medicaid changes take effect or Prop 19's tax reassessments make her no longer able to live in the house you've secured so they always have a place to live?

The cruel irony is that while other people's mortality awareness might help them live more presently, ours keeps us trapped in the future. Instead of savoring today's moments with our child, we're consumed with arranging tomorrow's safety net.

The Questions That Haunt Us

Maybe you recognize these thoughts. They visit me daily now:

Will the program I've chosen still be well-run in ten years? What if the good staff members leave? What if my daughter doesn't understand why I'm not coming to visit anymore? Have I set aside enough money or will it all be needed for my elder care? What if costs keep rising faster than the trust fund? Who will remember to celebrate her birthday the way she likes it—with Disney decorations and a new American Girl doll? Who will take her shopping and understand that she needs time to touch everything, to process each decision? Who will know that when she's upset, she needs her comfort items arranged just so?

And the big one, the one that makes me feel like I'm drowning: Am I the only person in the world who truly loves her unconditionally?

These aren't the kinds of mortality thoughts that lead to spiritual awakening. They're the thoughts that make you want to live forever, not because you fear death, but because someone needs you to.

When Love Makes Mortality Unbearable

At 70, I'm supposed to be making peace with my limitations. Instead, I'm raging against them. My hip hurts, half the time I can't remember what I just said, I get tired more easily—but my daughter still needs an advocate, a protector, someone who will never give up on her. Someone who understands that her love for Disney isn't childish—it's pure joy. Someone who knows that shopping isn't just an activity for her—it's exploration and decision-making practice wrapped in happiness.

There's a particular kind of grief in watching yourself age when someone depends on you completely. It's not just the normal sadness of time passing—it's the terror of becoming inadequate for the job you can never retire from.

Friends my age talk about "letting go," about trusting that they've done their job as parents. But how do you let go when your child will always be vulnerable? How do you trust a world that still sees disability as inconvenience?

What the Research Doesn't Understand

Those studies about beneficial mortality awareness assume you have some control over your legacy. You can write letters to grandchildren, donate to causes you believe in, make peace with relationships. Your death becomes about you—your readiness, your spiritual state, your closure.

But when you're a parent of a disabled child, your death isn't about you at all. It's about them. And no amount of planning feels like enough because you're not just arranging for their physical care—you're trying to ensure they'll still feel loved.

The research talks about how confronting mortality helps people focus on what really matters. Well, here's what really matters: making sure your child will be safe and cherished when you're not there to do it yourself. And there's no amount of meditation or philosophical acceptance that makes that feel manageable.

The Conversation We're Having Now

So here we are, those of us navigating these waters together. We're not looking for abstract wisdom about mortality—we're looking for practical strategies for an impossible situation.

Maybe it helps to know we're not alone in this particular form of anticipatory grief. Maybe it helps to name what we're going through: not depression, not anxiety exactly, but the rational response to loving someone who will always need protecting in a world that doesn't always protect the vulnerable.

Some days I try to channel my worry into action—updating legal documents, building relationships with care providers, strengthening advocacy networks. Those are good days, when the fear feels productive.

Other days, I try to force myself back into the present moment. To notice how my daughter's face lights up when she gets a new American Girl doll on her birthday or Christmas. To appreciate her excitement when we plan a Disney trip or even just a shopping expedition to Target. To appreciate that we're both here today, both healthy enough to enjoy each other's company. To remember that this love—complicated and exhausting as it is—has been the greatest privilege of my life.

What 70 Teaches Us

Turning 70 with a disabled child teaches you things other parents don't learn. It teaches you that love doesn't diminish with age—it intensifies. It teaches you that mortality isn't a philosophical concept—it's a logistical nightmare wrapped in heartbreak.

But it also teaches you something profound about what it means to be human. To love someone this fiercely, this protectively, this eternally—maybe that's its own form of spiritual practice. Maybe the meditation isn't on our own mortality, but on the fierce tenderness that makes us want to live forever for someone else's sake.

I don't have answers. I'm not sure anyone does for our particular situation. But I know this: we're doing something extraordinary in an impossible circumstance. We're aging with grace while carrying ungraceful fears. We're facing our mortality while fighting to transcend it.

And maybe that's enough for today. Maybe tomorrow we'll figure out a little bit more.

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If you're reading this and recognizing yourself, know that your worry comes from love, and your love matters more than you can possibly know. The best way to get through it is the keep walking and find support. https://www.php.com/support-groups/  Join us for the Parents of Adult Children with Developmental Disabilities the third Monday of every month. In the meantime visit https://www.personcenteredplans.org/caregivers to learn about steps you can take to explore options for planning. 

Ten Years Later: From 60 to 70

 

Now, it’s the “Oh $hit, I’m almost 70” phase.

—70. A milestone that once felt impossibly far off is now here, present, lived-in. I still feel young in many ways, but the truth is undeniable: I am in the phase of life where you can’t pretend there’s still plenty of time to get everything in order. The runway is shorter now.

I’ve been reflecting a lot lately. Ten more years of love, worry, planning, fatigue, advocacy, joy, and fear. Ten years watching Lauren grow, shift, surprise me, and need me—still. Ten years of doing my best to hand off pieces of the puzzle, bit by bit, without letting the whole thing fall apart.

And ten more years of quietly, painfully asking myself:

• Is it enough?

• Will it hold when I’m gone?

• Who will catch her if she falls—and will they see her, the whole her?

I’ve lived with these questions longer than I care to admit. I speak to families every week who are just beginning this journey, or who are stuck in that loop: “I know I should plan, but it’s just too hard.” I tell them gently: I get it. I am you. I've done the work, and I still wake up in the night with my stomach in knots.

Because here's the truth: Even when everything looks in place—legal documents, trusts, support teams, communication tools, circles of support—your heart doesn’t get the memo. It still races with the "what ifs."

Watching my mother’s final years unfold—with all the vulnerabilities and dignity of aging—I see more clearly how finite this all is. I know I likely have 15–20 more years to be a voice for Lauren, to reinforce the foundation, to smooth the transitions. But now I also know how quickly that time can slip away.

Here’s what the last decade has taught me:

1. Planning isn’t a one-time act—it’s a living process.

We don’t just write a trust or create a care plan and call it done. We live it. We revisit it. We test it. We make sure that the people around our children can actually follow what we’ve left behind.

2. Teaching Lauren to advocate for herself is still my number one job.

It’s no longer about just saying what she wants, but about others taking her seriously—listening to her preferences, honoring her boundaries, understanding her way of communicating, her humor, her rhythms. That kind of legacy doesn’t come from documents—it comes from building culture.

3. No system will ever be as good as a loving, attuned parent—but we can get close.

I ran my own small supported living agency for Lauren 14 years. One of the changes was to find an agency to take over while I’m still here. I still do the schedule and am highly involved. The staff, the routines, the one-page profiles, the person-centered practices—it works. It’s not perfect, but it’s designed around her, not around convenience or compliance.

4. Aging gracefully requires boundaries and self-care.

I’ve learned—sometimes the hard way—that I cannot do this well if I’m running on empty. I must rest, laugh, move, eat well, take my meds., even an antidepressant when I notice I’m feeling hopeless, and spend time with people who fill my soul. If I’m to be strong for Lauren, I have to protect my own energy like it's sacred. Because it is.

5. Sharing the path helps others find their way.

This blog, my presentations, the stories I share—this is part of the legacy too. So that the next generation of parents knows they’re not alone, not broken, not failing. Just human. Trying. Loving. Hoping. Planning.

 

So, if you’re reading this and feeling overwhelmed—maybe you’re 40, or 60, or 75—here’s what I want you to know:

Start where you are.

Do one thing.

Then another.

Then rest.

Then laugh.

Then try again.

Talk to your child about their wishes. Capture their routines in writing or pictures or voice memos. Build relationships with their support team. Make your health a priority. Go to that estate planning appointment. Write the messy draft of the “When I’m Gone” guide. It doesn’t have to be pretty. It just has to exist.

Leave the trail.

Because one day, someone else will need to find it.

And because—whether we want to admit it or not—we are the bridge between now and what comes after.

Unsure where to start? Have a look at  this list of things to consider. https://docs.google.com/spreadsheets/d/1YDsrWgVcYzANtUWOffSk-W24enmbnfuOLG5hu_5AY-o/edit?usp=sharing 

With love and solidarity,

Trudy, nearly age 70, still learning, still worrying, still hoping—and still building the road for Lauren.

The Missing Link: California's Failure to Include Families in Person-Centered Care Education

California has made significant investments in person-centered care, allocating substantial funding to train providers and agencies in this transformative approach that prioritizes individual preferences, choices, and quality of life. Yet there's a glaring oversight in this well-intentioned effort: the families who provide daily care and maintain 24/7 responsibility for their loved ones are being left out of the education process.

The Provider-Focused Approach

State funding flows generously toward professional development programs, training workshops, and certification courses for service providers. Agencies receive resources to restructure their programs around person-centered principles. Care coordinators attend seminars on implementing individualized planning processes. This professional education infrastructure is robust and comprehensive.

But person-centered care isn't just a professional methodology—it's a philosophy that should permeate every aspect of an individual's life, including the family relationships that often form the foundation of their support network.

The Family Reality

Families face a unique challenge. Even when their adult children reside in residential care facilities, parents and siblings often remain the primary advocates, decision-makers, and emotional anchors. They navigate complex medical systems, attend care planning meetings, and make countless daily decisions that impact their loved one's wellbeing. They carry the weight of 24/7 responsibility, even when they're not providing direct physical care.

These families desperately need to understand what person-centered care truly means—not just as a buzzword or policy requirement, but as a practical framework for honoring their child's autonomy while balancing health and safety considerations. They need tools to advocate effectively for their loved one's preferences and to collaborate meaningfully with professional care teams.

The Knowledge Gap

Without family education, person-centered care remains incomplete. When families don't understand the principles, they may inadvertently undermine person-centered goals. They might prioritize safety over choice, or fail to recognize opportunities for their loved one to exercise meaningful control over their daily experience. Conversely, they might struggle to communicate their child's unique needs and preferences to care providers who claim to be person-centered but lack deep understanding of the individual.

This knowledge gap creates friction between families and providers, reduces the effectiveness of person-centered planning, and ultimately shortchanges the individuals who should be at the center of their own care.

The Cost of Exclusion

California's investment in provider training will yield limited returns if families—often the most consistent and committed members of the care team—remain uninformed about person-centered principles. The state is essentially funding half a conversation.

The result is a system where professionals speak the language of person-centered care while families operate from a different framework entirely. Care planning meetings become exercises in translation rather than collaboration. Individual preferences get lost in the gap between professional knowledge and family understanding.

A Call for Inclusion

True person-centered care requires a coordinated approach that includes all stakeholders. California must expand its educational investments to reach families directly. This means funding workshops designed specifically for parents and siblings, creating accessible resources that explain person-centered principles in practical terms, and supporting family advocacy organizations that can provide peer-to-peer education.

Families need to understand that person-centered care doesn't mean abandoning their protective instincts or ignoring legitimate safety concerns. Instead, it means finding ways to honor their loved one's choices and preferences within a framework of necessary supports. It means recognizing their child as the expert on their own experience while acknowledging the family's continued role as advocates and supporters.

Moving Forward

The path forward requires recognizing families as partners in the person-centered care revolution, not obstacles to it. California's investment in this approach will only reach its full potential when every stakeholder—professional and family alike—understands and embraces the principles that put individuals at the center of their own lives.

Our most vulnerable citizens deserve nothing less than a coordinated effort that includes everyone who cares about their wellbeing. It's time to close the gap and ensure that person-centered care truly means person-centered—with families equipped to be full partners in that vision. 

From School Districts to The Abyss of Day Services

In my work parents call and ask me for a recommendation about the best daytime program out there.  It is with great angst these families find themselves plunged into the endeavor of finding daytime services as their child leaves their well planned, structured and much more predictable IEP-driven services.

When I faced this with my baby-faced 22-year old I recall the arduous task facing me. I walked into what felt like the abyss of day programs, none of which seemed like anything that the structure of the school district programs offered. I was depressed, fatigued and felt that I would never find the right place.  A few of the other parents and I began discussing how we could start our own program, buy a business, anything to keep them from what felt like the depths of the black hole of day programs.  Finally, several of us selected the same program and it went rather well.

A lot of my angst came from seeing the various aged participants and thinking... "My baby does not belong spending the day with these "old people".  Of course, I was ignoring the fact that she spent a lot of time with me and my friends and likely from her perspective, we were "old people" too.

15-year difference in age - they never considered it an issue.

Yesterday, in talking with a family, I had an "aha" moment.

I reflected upon my first job out of school where I worked with a variety of people who were of all different ages. From 20 somethings to 60ish folks and it never occurred to me that I didn't belong there.  I was after all, now in the adult world and that is who lives and works there.
As you begin your journey to seek an adult day program for your son or daughter, think about your first job. Your trips to the store. Your doctor's office waiting room.  All people. All ages.  All colors. All right.

Pause, reflect, then think "if this were a job site, would all the people there be my or my child's age?" I suspect not unless you work at Google where the random gray-haired wanders by.

Many of the older people in the programs have much to teach our younger folks. I found that they are often nurturing, have more maturity and acted as a model for where I hoped my daughter would move toward over time.  The great news is that she has! 

My girl is blind to a person's color, age and accepts all abilities, what a gift.  We need to take a lesson from our children.

If you need guidance from other families, join us at the Parents of Adult Children at PHP on the third Monday from 11am-12:30pm each month.

Best to all in this challenging endeavor!

Puzzling Ways To Change Behavior Patterns

I am in the process of becoming a Certified Person Centered Thinking Trainer because I am so passionate about this process. I have witnessed my daughter's life transform into a rich and full life.

We use one of the tools to achieve this. It is using "Important To" to get what is "Important For" her. It is a win-win and we are all happier as a result.

A video explanation featuring Michael Smull is available at https://www.youtube.com/watch?v=VDqERIxM4HM.

For now I'll share this video I created about our most recent endeavor which was a great success!

Feel free to contact me at journeyofchoice@gmail.com

And check out my newest project at www.thebffproject.org!

Interested in learning about Person Centered Thinking? Visit http://www.php.com/services/PCT

REALIZATION on my own Mortality: A process

I speak with hundreds of families each year about planning for their child's future when they are no longer able to provide the supports and supervision for their child, most of whom, like my daughter, will need a lifetime of supports.  The fact is, is that death is inevitable. While we hate to talk about it generally, a day doesn't pass where I don't wonder...

"Have I left the trail that needs to be there for Lauren?"
"If I died today, is there enough money?"
"How would Lauren survive without me?"
"Who will make sure people actually listen to her?"

... I know that I share this concern with hundreds of thousands of other parents who have dedicated their lives to raising a child with a disability, be it a developmental, mental health, or other factors that limit their ability to provide and fend for themselves.

See if this sounds familiar, it goes something like this... "I'm too young to think about it; to if I think about it", "it will happen" then,  "it can't happen, I need to be here for my child". Then you move to: "it might happen", to "Holy Shit! It's inevitable! I'm gonna die and I have so much to consider that it is crippling and preventing me from doing anything."

• In my 30's - I didn't much think about my mortality
• In my early 40's - I thought... well it is going to happen someday... I should think about it....
• In the late 40's - Hmmm... better put a trust in place. Conservatorship, too but I have lots of years left, after all I feel really young. But! "I Just Can't Die" I need to be here for Lauren. That was pretty much my motto.
• Early 50's - It seems that I should really do some good planning, after all it is the year I need my first colonoscopy. I guess there is merit in having a good plan since I am a half century old. 
• Mid-50's - ack.... I really am getting older, my baby now has a few crows feet and I have too many to count. Best get serious now.
• Late-50's - Oh Crap! I am going to die someday! It is inevitable! I had best get my act together and fast! 
• Now, it the "Oh Sh$t, I'm 60 phase, I need to make sure everything is in place and soon!

I share my birthday year with Disneyland, so you know that I embark on a landmark birthday this year. Many of you older than me may think... "she's still a baby", while, I am hoping, others say "no way! She can't be turning 60!" 

Watching my mother's health and quality of life fail at 84, I realize that I am of her genetics and I have probably another good 20 years to accomplish so much planning, documenting and getting my act together so that Lauren is protected. 

The moral of this story? I think that this type of end of life planning requires that we go through certain states in life before we are ready to take action. Many of us have our living trusts, wills, and special needs trusts in place.

Teaching Lauren self-advocacy skills is critical. Providing her with ways to communicate what is important to her and how people may best support her as a matter of daily routine is critical to her long term quality of life. 

I have been running my own supported living agency for Lauren for the past 8 years. I have trained her 7 support people to provide person centered services. We use person centered tools and the one page profile as the product that ties it all together.  Is it perfect? No. Is it better than she would get elsewhere? I believe that without a doubt. 

While trying to age gracefully, don't forget to take time for yourself so that you have the energy required to do what your child needs and plan for the future.  

• Take care of your own health.
• Go to parent education events.
• Do your legal planning to include a Living Trust and a Special Needs Trust set up by a an attorney specializing in this area.
• Leave a trail for others to follow on how to best support your son or daughter.

We all hope to live a long and productive life. I know that I do. We also need safeguards in place to protect our sons and daughters so that we may do so with piece of mind.