The umbrella of "special needs" applies to anyone with a cognitive or physical disability. At Serenitas Special Needs Planning, we are aware that there are hundreds of developmental disabilities that touch the lives of millions of families, friends, and professionals just like you. Regardless of the disability, we can provide you with a step-by-step process to ensure that your loved one's future quality of life is safe and secure.
Any parent will admit to being constantly worried about their children, no matter how old they grow to be. It is a primal impulse that cannot be separated from anyone with offspring. For parents with children living with special needs, they have a corresponding level of additional concerns for their children. These concerns include activities of daily living, social interactions, physical and financial security, and many others. The life expectancy for persons living with special needs is at an all-time high due to advances in medicine and social welfare. It is not unusual to find adults living with special needs conducting their lives to their best capacity. This also means that a fair number of people with special needs outlive their primary caregivers. Planning is not an option, it is a necessity.
Parents are generally encouraged to be proactive and make plans to protect the future interest of their children. This means making plans – preparing for the worst, particularly scenarios where they might not be in the picture. Some parents fail at this because of wishful thinking. However, it makes sense to create a safety net. As the famous saying goes, “Better to have and not need, than to need and not have.” For parents of children living with special needs, the stakes are higher to create a working care infrastructure for their children.
Beyond emotional reasons, the processes involved in making a thoughtful care plan for their child can seem overwhelming to parents. There are many moving parts. It can be very helpful to seek a qualified professional to help you work through the technicalities involved to create the plan that suits your particular situation. Make sure the professional you choose, specializes in special needs planning and understands how all aspects of planning are intertwined. The proper professional should guide you through the process as you will be planning for your entire family, not just your child living with special needs. Many parents are responsible for multiple children, and they need to make sure everyone is protected. This process involves discussion of Guardianship and/or Conservatorship in your State, First Party Special Needs Trusts, Third-Party Special Needs Trusts, Government Entitlements, Budget/Financial planning, and Lifestyle planning, and other considerations.
Failure to make these provisions means that the rigid requirements of the law are applied to a disabled person with obvious special needs. While some of them can be beneficial, several others are detrimental to the situation of the disabled person. If you pass away without a proper plan, the government will decide who will care for your minor children and adult incapacitated children. The State will also decide how your assets are divided. In addition, probate can be a lengthy and costly process. All of this can be avoided by embracing Special Needs Planning.
Some families believe they do not have enough money for a third-party special needs trust and other planning. Proper planning is most important for the vast “middle”. While the costs of care can be eye-popping, working with a knowledgeable professional can help in identifying which government benefits are available and understanding how to maximize them for your loved ones. Between the ages of 18 and 80, government cash benefits may add up to over $1,000,000 in today's dollars, and that is before considering lifetime healthcare through Medicare and Medicaid. Properly utilizing government benefits will dramatically reduce the amount of care required out-of-pocket.
Families caring for a child living with a disability have many questions. However, some families are not privy to the information, help, and resources available to them. Share information with them!
Download your copy of “The Beginner's Guide to Special Needs Planning”
It is estimated that more than 65 million people in the United States (about 29% of the population) provide care for a disabled, chronically ill, or aged family member or friend. The caregiver industry accounts for about $375 billion in unpaid labor every year. These numbers are expected to continue to rise yearly as people with disabilities live longer, better lives.
These statistics point out that there is a very large proportion of the population taking care of family members with a disability. It is almost impossible not to know a family or two that fall into this category. Proper planning, being one of the few things in life a family can control, is one of the greatest gifts a parent can give their disabled and typical children. It eliminates the stress on your successors from having to “figure out” what to do. Having a properly drafted Special Needs Trust, and understanding how to use it, can allow a person living with special needs the ability to accept an inheritance without that gift affecting eligibility for government benefits.
As private citizens, family members, friends, and neighbors, there a lot of things that we can do to assist these families and caregivers. Some are financial, while others are by non-financial care acts.
Unpaid primary caregivers* devote about twenty hours of care every week. This, in addition to their full-time or part-time jobs, can take a toll on anyone. Stressed caregivers are more likely to become negligent, frustrated, and depressed, reducing the quality of care they can provide.
*Are you eligible to be your child's paid caregiver? Learn about In Home Support Services (IHSS)
Thoughtful gifts of financial assistance, home renovation to improve quality of life, paying for professional care and expert help, etc. are all appreciated and essential resources. However, because of the rules for government benefit eligibility, consideration must be given to how a “gift” might affect the recipients benefits. A properly drafted Special Needs Trust allows gifts of all types to be held by the trust, allowing the recipient to have assets that can supplement what government benefits provide. Improper gifting can lead to one becoming ineligible for essential government benefits. Involved family and friends can also help through non-financial means such as –
e.g., picking up and returning books, videos or dry cleaning, food shopping, etc.
e.g., spending time around the house, attending social functions together, accompanying on hospital visits, planning special times together, etc.
e.g., tending to the weeds, shoveling snow, cleaning around the house, etc.
Making it easier for a caregiver to take time off work without fear of docked pay or limited career advancement opportunities.
Just as planning to care for loved ones living with special needs is an intentional effort, providing help for their parents is equally important. Whether families choose to take care of a loved one living with a disability by themselves, hire professional care, or some combination of the two, special needs child support calculations are unique to each family. As a trusted family member, you may consider offering to become a trustee and/or caregiver. There are no cookie-cutter solutions. Have a caring discussion.
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