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Special Needs Planning

Special Needs Planning

Special needs planning is the process of creating and maintaining a comprehensive financial strategy to address the unique needs of an individual with disabilities. This includes coordinating federal and state supports with family resources, organizing the support team (including family, trustees, state agencies, and legal, medical and financial advisors), and ensuring that proper documentation is in place such as special needs trusts, supported decision-making, guardianship or conservatorship papers and letters of intent.

How to Begin The Special Needs Planning Process

To begin the special needs planning planning process, you have to think about what will be the future needs of the individual with disabilities:

  • Will they need help making important life decisions? Many adults with Intellectual and Developmental Disabilities (IDD) need help with making important decisions about financial, medical, educational and life care. Traditionally adults with IDD were appointed a Guardian or Conservator who was imbued with the right to make decisions in place of the disabled individual. More recently there has been a movement towards Supported Decision-Making, where someone is authorized to help, but not supplant, the decision-making rights of the adult with IDD. Which route is most appropriate for a particular individual with IDD is an individual decision based on the particular abilities of the individual with disabilities.
  • Where will they live? Finding appropriate housing and supports for individuals with disabilities can be challenging and costly. Traditional group homes (3-6 individuals living in a home with 24/7 supports provided by the state) tend to be the more restrictive environment and can be very costly (over $100k/yr), remaining an option mostly for those eligible for state Medicaid funding (and then after getting off a waiting list). More flexible solutions include adult foster care, congregate living, clustered living, supported living, home shares and independent living (not all of which are available in all places). Which is most appropriate for an individual depends on their needs, family resources and possible combinations with state resourses. 
  • What supports will they need and how will they access them? Most services and supports for adults with disabilities are based on financial need.
    • Supplemental Security Income (SSI) is a government welfare program to provide a stipend for adults with disabilities to pay for basic needs such as food and shelter. To qualify for for SSI the individual has to meet the Social Security's definition of "disability", have limited income and assets under $2,000.
    • Medicaid is a joint federal-state health insurance program for low-income individiduals, including the aged, blind and disabled. In most states if you receive SSI you are eligible for Medicaid, although there are other methods. While most states use SSI's $2,000 asset limit, other states set the Medicaid bar lower (CT is $1,600) or higher (NY is $30,182). Even if your child has access to other health insurance, Medicaid may be important to access State Services (see below)
    • Supplemental Nutrition Assistance Plan (SNAP), formerly known as Food Stamps, is a government program to help financially needy adults pay for groceries. There are special enhanced rules for individuals who are "disabled" as per Social Security rules.
    • Affordable Housing and Section 8 Vouchers are among the housing supports available for low-income adults, including those with disabilities. Other housing supports include rent subsidies, the Lifeline free cell phone service and energy subsidies. 
    • State Services are sometimes available as Medicaid waiver programs for individuals with IDD, mental health and physical disabilities to help them with day, employment and housing supports. However, as Mediciad is a federal-state partnership, each state gets to decide which disabilities they will fund and at what level, with many states have waiting lists for services.
  • What documents might be needed to effectively plan? 
    • A Special Needs Trust (SNT) allows families to leave resources to help with the care of an adult with disabilities in a way that does not interfere with the means-tested benefits that may be important to them. For others with disabilities, the SNT allows a competant third party to control funds for an individual to protect them from creditors, predators and divorce.
    • Powers of Attorney or a Supported Decision-Making Agreement can authorize someone to help an adult with disabilities make important life decisions.
    • A Letter of Intent can help families document important information such as family and individual medical history, employment history, social and recreational activities, desired living situations, and other important informaton that the indvidiual with disabilities may not know or be able to effectively communicate to a future caregiver.

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