RESOURCES FOR SPECIAL NEEDS TRUST FUNDS
Are you wondering how to set up a special needs trust? Looking for support groups for parents with a special needs child? Not sure what options are available to help set your family and special needs child up for success? Need some guidance on setting up a special needs trust in Chicago?
While our advisors are here to answer all your questions and guide you through the processes, we also invite you to take advantage of the helpful resources below.
Websites
Academy of Special Needs Planners provides a general overview of strategies parents and others can use to plan for their own futures and for those of family members with special needs. This is a good referral network of financial planners, attorneys and trustee who fully understand Special Needs planning.
Alliance of Pooled Trusts (APT)
Alliance of Pooled Trusts (APT) is the first coalition in the United States dedicated to uniting Pooled Trust providers in establishing
best practices for the industry. APT serves as a resource for its members and promotes high-quality pooled trust administration for the
special needs community.
Equip for Equality has a mission to advance the human rights and civil rights of children and adults with physical and mental disabilities in Illinois. It is the only statewide, cross-disability, comprehensive advocacy organization providing self-advocacy assistance, legal services, and disability rights education. They also engage in public policy and legislative advocacy and conduct abuse investigations and other oversight activities.
Illinois ARC advocacy group is for individuals with developmental disabilities. They are committed to empowering persons with disabilities to achieve full participation in community life through informed choices.
The Illinois Council on Developmental Disabilities (ICDD) is dedicated to leading change in Illinois so that all people with developmental disabilities are able to exercise their rights of freedom and equal opportunity. The Council’s work is carried out across the state through a network of advocates who educate the public on current issues while encouraging change. The ICDD continues to listen to the needs of individuals with developmental disabilities and their families by investing in new programs to improve the delivery of services and support.
The Council focuses on a wide range of programs to help improve the opportunities people with developmental disabilities in IL are given, including education, employment, transportation, community living, and health care. Just as importantly, ICDD works to build the capabilities of individuals, families, and communities, enabling each to become more self-sufficient through the Developmental Disabilities Assistance and Bill of Rights Act (the DD Act).
https://www2.illinois.gov/sites/icdd/Pages/default.aspx
Illinois Department of Healthcare and Family Services (Medicaid)
http://www.illinois.gov/hfs/Pages/default.aspx
Illinois Department of Human Services is one of Illinois’ largest agencies, with more than 14,000 employees and an annual budget of over $5.6 billion. Illinois created DHS in 1997 to provide our state’s residents with streamlined access to integrated services, especially those who are striving to move from welfare to economic independence, and others who struggle to become self-sufficient. The DHS is proud of the diverse and efficient services that they provide to Illinois citizens. I need to adjust the paragraph on this one as it currently sits on webpage.
Illinois Department of Human Services: requirements for preneed or prepaid funeral
In order for there to be a Medicaid (IDHFS) exemption, they must be irrevocable with no cash surrender. The exempt amount is limited to the price of funeral goods and services to be provided upon death as specified in the contract. The contract must include a complete description of the funeral goods and services to be provided, and the price of those goods and services. Any amount not specified in the contract will be treated as a transfer for less than fair market value.
https://www.dhs.state.il.us/page.aspx?item=1490
Illinois Healthcare Reform under the Affordable Care Act
As part of the Affordable Care Act (ACA), uninsured Illinoisans have new options for health coverage either through the state’s Medicaid program or through the Federal Health Insurance Marketplace (the Marketplace). These options make it more affordable to get health coverage and meet the federal requirement that all individuals have health coverage starting in 2014.
https://www.illinois.gov/hfs/MedicalClients/AffordableCareAct/Pages/default.aspx
Illinois Network of Independent Living Centers
Information on special needs financial planning
Medicaid (Centers for Medicare and Medicaid Services)
NAELA is comprised of attorneys in the private and public sectors throughout the country who deal with legal issues affecting seniors and people with disabilities. Members also include judges, professors of law, and students.
National Organization on Disability. The site contains recent news on topics such as court decisions and offers fact sheets about what government services are available and whom to contact to find out more about them.
Pre need or Prepaid Burial Plans (IDHFS Rules) – for a beneficiary who has an OBRA 93’ Payback trust, the state on behalf of Medicaid has first lienholder rights over the trust after the beneficiary passes away. So, it critically important that a Parent, family members and/or the beneficiary know the stark reality of a Payback trust without a preneed burial plan set up. Typically, in the estate planning field, most people assume that a trust
will cover the costs for burial and funeral arrangements of the beneficiary. But that is not the case for a Trustee
over an OBRA 93’ Payback trust. That is why it is so critically important to consider setting up with the use of the Payback trust funds
during the beneficiary’s lifetime to fund an exempted Pre-Need or Prepaid funeral plan. Here is where you can find out
more information about the Illinois requirements to setting up a Preneed funeral plan. Your Trustee may have some good referral options
in setting one up for their beneficiary.
https://www.dhs.state.il.us/page.aspx?item=14914
The Ray Graham Association is dedicated to encouraging full participation of those with developmental disabilities for a high-quality life by providing leadership, supporting individual accomplishments, strengthening families, and inspiring community involvement.
The Social Security website has information regarding regulations on the treatment of trusts. They also have an internal staff manual called the Program Operations Manual System, commonly called the POMS.
The Social Security Administration Procedural Operations Manual System (POMS).
https://secure.ssa.gov/apps10/poms.nsf/lnx/0501120203#b2
Social Security Disability Insurance (SSDI TITLE II benefits)
www.socialsecurity.gov/disability
The Special Needs Alliance (SNA) is a national, not-for-profit organization of attorneys dedicated to the practice of disability and public benefits law. Individuals with disabilities, their families, and their advisors rely on the SNA to connect them with nearby attorneys who focus their practices in the disability law arena.
Social Security Redbook- This is a very good resource as an easy to follow handbook for information about SSA benefits for people with disabilites and employment through the Social Security Administration.
https://www.ssa.gov/redbook/eng/main.htm
Substance Abuse and Mental Health Services Administration
Guides
Pooled Trust Programs for People with Disabilities: A Guide for Families by The Arc, 2002, available at this site. It is a 16-page guide with an overview of pooled trusts, public benefits, principles, and rules with descriptions of the many types of Special Needs Trusts and acomplete listing of pooled trust programs in the US in 2002.
(DOWNLOAD)
Special Needs Alliance Trustee Handbook
Have you been named as trustee of a special needs trust? Have you created a special needs trust, and wonder what the job of the trustee actually is? Are you a trust beneficiary, trying to figure out what the trustee is permitted — and required — to do? The Special Needs Alliance is pleased to offer its free booklet on administering special needs trusts. In uncomplicated explanations, it can help you understand the choices and
obligations.
https://www.specialneedsalliance.org/special-needs-101/free-trustee-handbook/
Books
Planning for the Future, Providing a Meaningful Life for a Child with a Disability after your death, by L. Mark Russell and Arnold E. Grant.
Special Needs Trust A Guide for Trustees Administration Manual 2005 Edition, Barbara D. Jackings, Esq, Richard S. Blank, Esq., Ken W. Shulman, Esq., Peter Macy, Esq., Harriet H. Onello, Esq.
IDHFS Service Coordination Manual
This is where you find services for indviduals with disablities in Illinois through Medicaid and Medicaid waiver services.
