Planning for and pondering your mortality is not the most pleasant activity. However, the day when your estate planning documents become useful will come no matter how much preparation you’ve done, particularly if you have children or loved ones you take care of.
An important part of making sure your estate plan is clear and covers all the bases is an advance healthcare directive. You might have heard about this document, but few people understand how important it is. Below, we break down what adults with intellectual and developmental disabilities (IDDs) and their families need to know about advanced healthcare directives in California and how you can optimize them.
An advanced (or advance) healthcare directive is a legally recognized document that specifies the care an individual wishes to receive or avoid in certain situations. It can be useful when someone loses the capacity to make decisions for themselves but is still alive and may benefit from medical treatments. For instance, someone with dementia may want to spell out specific interventions they want doctors to provide them when their condition becomes advanced.
Advance directives in California* allow individuals to also appoint someone (a proxy, surrogate, or agent) to make decisions on their behalf. This section is often referred to as a durable power of attorney (POA) for health care.
*Note: In California, your attorney may refer to your directive as an “Advance Directive for Health Care,” which is generally regarded as its proper legal name.
State laws and guidelines on advance healthcare directives can sometimes lead to confusion when other estate planning documents, like living wills, get thrown into the mix. One of these documents, a living will, can sometimes get conflated with advance healthcare directives.
In California, a living will is part of an advance healthcare directive—they are not separate documents. Californians may bundle their living wills and powers of attorney for health care into one comprehensive document. In addition to living wills and POAs, California advance directives in health care can contain things like DNRs (do not resuscitate orders), DNIs (do not intubate orders), and Physician Orders for Life-Sustaining Treatments (POLSTs).
Each Californian’s advance healthcare directive should be tailored to their wishes and cover every reasonably conceivable scenario involving their medical incapacity. As you’re filling out your documents, you should think about:
Advance healthcare directives are not legally binding, but healthcare professionals generally follow them as long as their instructions do not violate widely accepted medical ethics.
Californians with intellectual or developmental disabilities (IDDs) have the right to create their advance healthcare directives just like anyone else. Person-centered planning principles have helped people with IDDs assert their legal rights and determine their own destinies. After all, adults in California are presumed to have mental capacity unless otherwise proven.
In many cases, disabled Californians may have the capacity to make some decisions, such as selecting their healthcare proxy, but not every decision the healthcare directive form offers. You may want to consider forming a conservatorship if your loved one’s capacity to make decisions is impacted by their disability.
Creating an advance healthcare directive is only one action you can take to help ensure a life of self-determination. Whenever and wherever possible, you deserve to live life on your terms. Advance healthcare directives—and estate planning in general—may require some challenging conversations, but the peace of mind you’ll have is second to none.
NeuroNav provides independent facilitation services for Californians interested in the state’s Self-Determination Program (SDP). We can help you develop a person-centered plan, communicate with your regional center, create a spending plan, find vendors, and broadly advocate for your independence.
If you’re already in the SDP, we can provide ongoing facilitation so your plans can keep up with your goals and dreams. We’d be honored to set up a consultation for you and your loved ones.