- “Theory of Mind” deficit causing the inability to understand concepts
- The inability to engage in conversational speech such as sharing ideas, thoughts, needs, and wants and appropriately and responding to the intimate sharing of another person.
- A severely limited ability to articulate beyond simple requests and observations
- Sensory challenges that interrupt task completion and cause emotional disregulation
- Movement disorders like catatonia or severe repetitive behavior rituals
- Severe impairment in making and maintaining social relationships
- Intellectual impairments that reduce competence in judgment related to safety, self-care and self-advocacy
Leaving a substantial trust fund for an autistic child elevates the quality of their long-term care. Parents should prioritize securing a robust special needs trust for their adult autistic child over their self-interests. Unforeseen challenges can occur in the life of a special needs person that may result in excessive costs. Having substantial funds available in a trust and retaining a family residence for their long-term residence promotes more positive life outcomes.
These challenges require more supervision and staffing to maintain safety and increase the opportunity for fulfilling experiences and personal growth in all functional domains. It is untrue that group homes and government funding will always provide adequate care for a severely autistic person. Parents with the financial means to provide resources for higher-level intervention should do so as part of their conservatorship, fiduciary responsibilities and concern for their child. More importantly, families should provide the maximum resources possible out of love and dedication to help their child reach their full potential. Many programs and group homes for lower functioning individuals do an adequate job on providing safety and meeting physical needs. However, they often are lacking in the areas continuing education, vocational training, and social/ emotional and cognitive advancement.
For example, paying off a family home and putting the equity in a special needs trust may not be what a parent wants to do. However, maturity and a sense of responsibility will help a parent realize that self-sacrifice is the moral, loving action to take to ensure their loved one will have the resources to be more than minimally cared for after their parents are gone. Parents who have mismanaged their finances are faced with mid-life or retirement financial challenges that may make providing an adequate home or trust fund more difficult. In these circumstances parents must prioritize their child’s needs over their own, whatever the sacrifices might be.
For example, retaining the family home as an alternative living situation is a helpful emotional net for family members or professionals who will eventually serve as trustees or conservators. Having funds from home equity or life insurance policies allows for the ability to secure services and treatments that Medicare, Medi-cal, or SSI benefits may not cover. Missing out on access to higher-level medical treatments or better housing because parents didn’t make the right financial decisions is a tragedy that should not be inflicted on a person with special needs if at all avoudable.
Most people who work with individuals with special needs have the best intentions. However, as a parent of a severely autistic son who is unable to participate in self-determination, there is an awareness that interventions may remain inadequate when the ASD person cannot advocate for themselves. Group homes can close, settings may become inadequate, safety conditions in group settings will fluctuate, and placements may become under-stimulating or inappropriate in some unforeseen way. Without an involved family with sufficient funds, the intellectually disabled person will suffer in silence or settle for less than they deserve and need. More severely impaired people may fair better living in a family home with familiar and predictable conditions. A combination of day program participation and in-home services is an approach that can be the most compassionate and effective option for these individuals who deserve the chance to live the best life possible. The familiar, stable environment of a lifelong home supports emotional stability, independent functioning, and the opportunity to grow. Disruption and drastic change should not be forced on individuals who have a limited capacity to understand why they can no longer go home.
Laws need to be better at protecting the rights of autistic and other intellectually challenged individuals in the area of family home retention, special needs trust management, and overall fiduciary responsibility.
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