When I Am No Longer Able

About this event

Use this Link to get on the waiting list.

"What will happen to my son or daughter when I am gone?"

For parents of an adult with an intellectual or developmental disability, this question may never fully go away. It can bring recurring grief, anxiety, guilt, and a feeling that we cannot allow ourselves to become sick, grow older, or be needed less.

This workshop is not about eliminating those feelings or pretending everything will be fine. It's about understanding them, moving through them, and living fully alongside them.

GUIDED BY AN EXPERT IN GRIEF, TRAUMA & HEALING

Karyn Harvey, PhD

Psychologist · Author · Therapist · Trainer

Dr. Harvey brings more than 35 years of clinical experience in the field of intellectual and developmental disabilities. She holds a PhD in Applied Developmental Psychology from the University of Maryland and is a nationally recognized leader in trauma-informed support, grief, and healing. With warmth and deep understanding, she will guide families toward connection, purposeful action, and hope.

Due to the sensitive nature of this program, it will not be recorded or available on Zoom.

GROUNDED IN RESEARCH

This worry has a name — and research shows how families move through it.

Researchers who study families raising a child with an intellectual or developmental disability describe the grief involved not as a single event to get past, but as something that can resurface again and again across a lifetime — often intensifying in later life as parents confront their own aging and what becomes of their son or daughter afterward. Clinical literature on aging caregivers treats this "when I am gone" fear as close to universal, centered on housing, money, and who will notice if something is wrong.

Left unspoken, that fear takes a toll: studies of older parents caring for adult children with disabilities link the worry to high stress and a persistent sense of helplessness, and find that most families, despite constant worry, never get around to concrete planning — the fear itself can feel too large to act on.

But the research also points to what helps. In one evaluated program, pairing legal and financial training with small peer-support workshops led families to significantly increase completion of letters of intent, residential plans, and special needs trusts — and measured caregiver burden dropped along the way. Broader reviews reach the same conclusion: education, peer connection, and guided future planning consistently ease this burden and help families move from paralysis into action.

Sources: Brown, "Recurrent Grief in Mothering a Child with an Intellectual Disability to Adulthood," Child & Family Social Work · Fernández-Ávalos et al., Journal of Applied Research in Intellectual Disabilities (2021) · Cook & Cohler, "Helping Parental Caregivers Cope with Parental Aging and Loss," Psychiatric Services · Dillenburger & McKerr, British Journal of Learning Disabilities (2011) · Heller & Caldwell, "Supporting Aging Caregivers and Adults with Developmental Disabilities in Future Planning," Mental Retardation (2006) · "Domains of Planning for Future Long-Term Care," PMC

Moving through anxiety and anticipatory grief

This is an in-person working session on Saturday, November 7, 2026, from 9:00 AM to 4:00 PM .

Dr. Karyn Harvey will be present at the event. The afternoon is the interactive portion — come prepared, and feel free to bring a laptop for notes and activities.

Name and understand it. Recognize chronic anticipatory grief, its triggers, and the ways it shows up emotionally and physically

Make space for feelings. Explore ways to acknowledge grief and anxiety with compassion instead of suppressing or being controlled by them.

Practice coping tools. Work with practical strategies for calming the nervous system and returning to the present.

Replace isolation with connection. Experience the relief of being with other families who understand this reality without needing it explained.

Turn fear into action. Identify small, achievable steps that reduce helplessness and build confidence about the future.

Make room to thrive. Discover how grief and hope can coexist — and how families keep experiencing meaning and joy now.

Due to the sensitive nature of this program, it will not be recorded.

Travel and Hotel Information

The event will be held at The Sobrato Center 1400 Parkmoor Avenue, San Jose, California 95126.

Nearby hotel options include:

• The Row Hotel, BW Signature Collection 2404 Stevens Creek Boulevard, San Jose (six minutes to site)

• Courtyard by Marriott San Jose Campbell 655 Creekside Way, Campbell (five minutes to site)

• TownePlace Suites by Marriott San Jose Campbell 700 E. Campbell Avenue, Campbell (11 minutes to site)

• Campbell Inn 675 E. Campbell Avenue, Campbell (eight minutes to site)

• DoubleTree by Hilton Hotel Campbell—Pruneyard Plaza 1995 South Bascom Avenue, Campbell (seven minutes to site)

For those flying, we recommend San José Mineta International Airport (SJC) , just ten minutes from the event location.

Coffee, Snacks and Lunch will be provided. Please let us know in advance if you have any dietary restrictions.

We do not accept Purchase of Service from Regional Centers. You must pay for your ticket at the time of registration.

Questions?