Since 2011, Sacramento Autistic Spectrum and Special Needs Alliance (SASSNA) is devoted to ensuring the well-being of children with special needs in the Sacramento metropolitan area. Their “conceptual and practical interventions” are highly influential in increasing the quality of life for these young people.
The history of SASSNA
SASSNA is a California tax-exempt nonprofit corporation comprised primarily of families of mentally-diverse youth, professionals, mentally-diverse adults, and other interested individuals. The alliance was established by behavior analyst and disability advocate Dave Gaines, who is also on the autistic spectrum and has obsessive-compulsive disorder.
SASSNA’s original board of directors included Dave Gaines, two parents of children with special needs, an autistic adult, and an adult with Fragile X. This unique group of individuals built this impressive alliance and developed it into an operating nonprofit corporation.
The mission and purpose of SASSNA
The mission of this extraordinary organization is to ensure that children with special needs are nurtured and protected and given a chance at self-defined happiness and a healthy life. The assistance they provide is comprehensive in order to address every aspect of the child’s development. SASSNA provides case management, which guides families through every important step of successfully raising a special child. SASSNA also helps families to exercise their rights and the rights of their children with issues such as educational services, government services, employment, and others.
Other benefits and services offered by SASSNA
SASSNA also provides social and recreational events for the families and children, as well as, informational, education and support events. Financial and material assistance, such as providing clothing, toys, educational supplies, and therapeutic materials, are also provided to families, based on need.
Planning for children with special needs
While advances in medicine have led to much better health care for children with special needs, those advances mean our special children are now living longer than they have in the past. While this is obviously good news for families, far too many parents are unprepared for the significant expense of caring for a special child. Add on the parents’ responsibility for planning their own long-term care and retirement needs, and it can all be overwhelming.
Ensuring long-term care for your child
The basic goal of estate planning is to ensure your loved ones are well taken care of when you become incapable of providing that care. You need to plan for your death as well as the possibility of becoming incapacitated in the future. Loved ones with special needs require special planning in order to ensure their needs will be met.
Why your family needs a special needs plan
If you have ever cared for a child with special needs, you know that it takes a great deal of planning and support to properly care for their personal needs and their health care needs. If your child receives need-based government assistance like Medicaid and/or Supplemental Security Income (SSI), you need to be able to protect your child’s eligibility for those benefits programs. Planning can accomplish those things.
Relying entirely on family and friends may not be enough
A common misconception is that all you need are your family members and friends, who will automatically step up and provide the care your child needs if you are no longer able to provide that care. Even if that is the case, as parents you should still be sure to provide a basic foundation for your child’s care, simply to ensure continuity of care. At the very least, your child needs the security that a special needs plan will afford.
Consider a third-party special needs trust
A special needs trust is an important estate planning tool used to provide protection and support for your child, even after your death. The biggest benefit is that a third-party special needs trust can also protect your child’s eligibility for need-based government benefits programs such as SSI and Medicaid. A third-party special needs trust is funded with the parent’s property for the benefit of the child. As such, the trust will not jeopardize your loved one’s eligibility for benefits. Just be sure your child does not receive any property directly.
If you have questions regarding resources for children with special needs, or any other special needs planning matters, contact the Northern California Center for Estate Planning and Elder Law for a consultation, either online or by calling us at (916) 437-3500.