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.

Equip for Equality has a mission to to advance the human 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 while also engaging in public policy and legislative advocacy and conducting abuse investigations and other oversight activities.

Illinois ARC advocacy group for individuals with developmental disabilities 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 to freedom and equal opportunity. The Council’s work is carried out across the state through a network of advocates that educates the public on systems issues while encouraging change. 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 supports they deserve.
The Council focuses on a wide range of programs to help improve the opportunities people with developmental disabilities in our state are afforded, 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).

Illinois Department of Healthcare and Family Services (Medicaid)

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 work and economic independence, and others who face multiple challenges to self-sufficiency. DHS is proud of its diversity, efficiency, and the services that the agency and its community partners provide to Illinois citizens.

Illinois Dept. of Human Services Pre Need or Prepaid Funeral contract requirements

In order for the preneed to be 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. Treat any amount not specified in the contract as a transfer for less than fair market value.

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.

Illinois Network of Independent Living Centers

Medicaid (Centers for Medicare and Medicaid Services):

NAELA membership 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 of interest, including court decisions, and offers fact sheets about what government services are available and whom to contact to find out more about them.

Ray Graham Association is dedicated to the full participation of all people with developmental disabilities in a quality life by providing leadership that supports the accomplishments of individuals, strengthens families and inspires community involvement.

Social Security home website does have regulations on the treatment of trusts. They do have an internal staff manual called the Program Operations Manual System commonly called the POMS which is on the website.

Social Security Administration Procedural Operations Manual System (POMS)

Social Security Disability Insurance (SSDI TITLE II benefits):

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.

Special Needs Financial Planning

Substance Abuse and Mental Health Services Administration:


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 a complete listing of pooled trust programs in the US in 2002.

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 trustee is actually like? 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 plain English, it can help you understand the choices and obligations.


The Special Needs Planning Guide, by John W. Nadworny and Cynthia R. Haddad

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.