A Planning Guide For Parents Of Children Who Have Special Needs

A Planning Guide For Parents With Children Who Have Special Needs

Below are action items to take when you have a child, of any age, who has special needs.

Personal Information

Keep all of your records and your child’s personal information (name, nicknames, date and place of birth, phone numbers, Medicare number, Medicaid number, addresses, etc.) in an accessible place. You should also keep a separate folder with copies of birth certificates, adoption papers, military service records, passports, deeds, health insurance cards, insurance policies, stock certificates, marriage and death certificates of parents, Social Security cards, automobile titles, divorce decrees, usernames, and passwords.

Emergency Contacts

Create a document listing emergency contacts for you and your child. Include contact information for your spouse, partner, significant other, children, siblings, and parents. For your child, you should have the name and all of contact information of the person(s) you want to care for your child in case of an emergency.

Medical Providers and History

This list should include the names and contact information of primary care providers and specialists, medications, allergies, significant family history, insurance companies and policy numbers, health insurance, medical equipment providers, therapists, independent service coordination agency, care managers and any Medicaid or Medicare information. If you have prepaid your or your child’s funeral or burial, keep this information here as well. If your child is still in school, include information about his or her school, individual education plan, and staff at the school who work with your child.

Financial Information

Create a document for financial information. This includes the gross and net amount of each source of annual income (employment, social security, supplemental security income, etc.) and current value of assets such as home, car, stock, trusts, etc., the death benefit (if any), and all beneficiary designations associated with the asset. Also include policy numbers and contact information, the names of any of you financial advisors, a copy of your most recent tax return, information on property taxes or rental lease and a section on recurring bills, including whether the bill is paid on-line or by an automated payment. If you have a safe-deposit box, where is the key? For your child, you should include all information concerning his or her representative payee accounts and special needs trust accounts. Copies of statements should be kept in a safe place or scanned and stored securely online.

Legal Information and Documents

Do you have a power of attorney for health care, power of attorney for property/finances? A will? A living trust? have you created a special needs trust for your child? If yes, where are these documents? Do you have any contract or loans? Make sure to keep the documents up-to-date and have the current contact information for your attorney, executors, agents, trustees, beneficiaries, etc.

If you don’t have legal documents, meet with an attorney who concentrates in assisting people who have special needs. This is a specialized area of law and not all attorneys have the understanding, experience, nor compassion to assist you. Not only can an attorney draft the necessary documents for expressing how you want your property, finances, health care, and care of your children handled following your death and/or incapacity, but your attorney can also help you set up financial strategies, such as trusts, to ensure that your child with a disability can continue to maintain a quality life when you are gone. The attorney should also be familiar with Medicare, Medicaid, Social Security, and Supplemental Security Income (SSI) and the unique challenges that a disability brings to the estate planning process. This attorney can also assist to determine what arrangements should be made for you or your child at death.

Public Benefits

Investigate what public programs your loved one qualifies for and / or is entitled to.

Social Security: A Federal insurance program that provides benefits to people who are retired, unemployed, or have a disability. There are three main types: Social Security Retirement Income (SS), Social Security Disability Income (SSDI), and Supplemental Security Income (SSI)

Medicare: A national health insurance program that is primarily for people aged 65 and older but also for some younger people who have a disability status as determined by the Social Security Administration, and people with end stage renal disease and ALS.

Medicaid: A program supported with Federal and State Funds that helps with health care costs, facility based, and personal care services. In Illinois, the “Medicaid Agency” is the Illinois Department of Healthcare and Family Services. For determination of eligibility, Illinois Department of Human Services is the coordinating agency.

Medicaid Waivers: state-run programs that use federal and state funds to pay for services for people with certain health conditions. They permit states to use flexibility to design publicly financed health care systems outside of certain federal Medicaid statutory and regulatory requirements. Each state has different Waivers with different eligibility requirements or services. Illinois has nine (9) Home and Community-Based Service (HCBS) waivers. Each waiver is designed for individuals with similar needs and offers a different set of services.

SNAP (Supplemental Nutrition Assistance Program): a federal program that provides food-purchasing assistance that is coordinated the Illinois Department of Human Services PUNS List (for people who have a developmental disability). Work with your local Independent Services Coordination Agency (ISC) to be included on the PUNS list. It is for anyone who may need help from the government to pay for services now, or in the future. To locate your ISC, you can go here or here.


If you are the guardian of your child, make sure you identify the people to succeed you if you are no longer able to serve. If you do not have a guardianship for your child but believe it may be needed after your death, you should discuss this with your attorney and obtain advice on the steps to take to be sure your child will be protected. Your planning should include identifying possible guardians and making sure those individuals understand the steps they will need to take to have the court appoint them for that role.

Review and Update your Plan

Remember that planning for the future is a process, not a one-time task. As circumstances change for you and your child, you will need to revisit your plan annually.

This information is not to be considered legal advice. If you have questions about it, please contact us.

ABLE Accounts Come To Illinois

ABLE Accounts Come To Illinois


“ABLE” Accounts are a recent creation of federal law designed for individuals with disabilities to allow them to have a tax-free savings account which does not affect eligibility for public benefit programs such as SSI and Medicaid. States must establish the ABLE Account Programs. The new Illinois ABLE Account program is administered by the Illinois Treasurer’s office.

An ABLE account may be owned by a person with disabilities who became disabled before reaching the age of 26. Funds held in ABLE accounts grow tax free and may be used for “qualified disability expenses”. Each person may have only one account in the nation. The maximum annual contribution to an ABLE Account is $14,000 from all sources, and contributions must be in the form of money. A designated representative who may be a guardian, agent under power of attorney for property, or a properly witnessed written designation, may act on behalf of the owner with disabilities.

“Qualified disability expenses” means any expenses related to the eligible individual’s disability which are made for the benefit of the eligible individual who is the account owner, including the following expenses: education; housing; transportation; employment training and support; assistive technology and personal support services; health; financial management and administrative services; legal fees; expenses for oversight and monitoring; and funeral and burial expenses.

ABLE accounts, income and qualified distributions do not affect the owner’s eligibility for SSI and Medicaid. However, to maintain eligibility for SSI, the account value cannot exceed $100,000. To maintain eligibility for Illinois Medicaid, the account value cannot exceed $350,000. If there are funds remaining in the ABLE Account at the owner’s death, States that provided medical assistance, including services under Medicaid home-based programs, are paid back from the remaining funds in the ABLE Account.

Although there are drawbacks, ABLE accounts can be very useful. An ABLE account is useful where a relative has left an inheritance of less than $14,000 directly to an individual with disabilities who is receiving Medicaid or SSI. ABLE accounts could also be used to avoid the 1/3 reduction in SSI for family contributions to the individual’s food and shelter expenses. If the family contributes the funds for food and shelter to an ABLE Account, its use will not cause the 1/3rd reduction to SSI as it would if such funds came directly from the family or a special needs trust. Before considering an ABLE account you should consult with an experienced special needs planning attorney. The National Academy of Elder Law Attorneys is able to provide referrals. You can also go to the State of Illinois Able Account program for more information.

This information is not to be considered legal advice. Finally, if you have questions about the ABLE program, you can contact us.

Tips For Helping Family Members With Finances

Tips For Helping Family Members With Finances

A frequent challenge is how to help older family members with their finances without taking away their autonomy or getting into a tug-of-war over the issue. Concerns often arise when visiting loved ones and finding that bills have not been paid, papers are in disorder, or even that utilities have been cut off. It’s not unusual to find family members defrauded by predators or going on a shopping spree on the Home Shopping Network.

All relationships are different. Some older adults freely share financial information with their loved ones and readily let them participate in bill paying and investment decisions. Others hold onto control as if their lives depended upon it—and well it might, to the extent that they would lose their identity along with their checkbook. They may even suspect their loved ones of wanting to take their money.

There’s no single answer for every situation. The following, however, are approaches that have worked for our clients in the past:

  • Offer to help with bill paying. Permit the older adult to continue to control the checkbook, but schedule a monthly sit-down to go through all of the bills that have accumulated. The family member writes out the checks and the older person signs them.
  • Use the Internet. With on-line access to accounts, you can monitor them. If unusual payments or transfers occur, actions can be taken, rather than waiting to review monthly statements.
  • Segregate accounts. Leave the older adult in charge of the family checking account, but take control of investment accounts. This will leave only smaller amounts at risk, rather than the person’s entire estate.
  • Make sure the older adult does estate planning while competent. Through properly-executed durable powers of attorney and revocable living trusts, loved ones can step in when needed.
  • “Play” on family responsibility. While it is contrary to the traditional “parent-child relationships” for the child to handle the parent’s finances, it is consistent for the parent to take care of their child, no matter what their age. Explain the need to help with finances as a way to put the adult child’s mind at ease, rather than as a response to the parent’s increasing need for assistance. Stress that this is something the parent can do for the child, rather than the other way around.
  • If all else fails, it may be necessary for the family member to seek court appointment as guardian or conservator over the older person’s finances. While this gives the guardian complete control, it removes the older person’s right to make any financial or legal decisions. This can be very difficult emotionally and financially because it involves legal costs, periodic reporting to the court and, in some instances, the necessity of seeking court approval for expenditures or estate and long-term care planning steps that could be carried out freely under a durable power of attorney or revocable living trust.

Just as there is no single answer for every family situation, it may be necessary to try various interventions to determine which one(s) works best.

This information is not to be considered legal advice. If you have questions about this blog, please contact us.

A Guide To Special Needs Trusts

A Guide To Special Needs Trusts


Why Create a Special Needs Trust?

A Special Needs Trust can be an important tool for a disabled individual who is, or may become eligible, for Supplemental Security Income or Medicaid but has excess assets preventing eligibility. Supplemental Security Income (SSI) is the Social Security program that grants income to people who are age 65 or older, blind or disabled with limited income and assets. Medicaid is the state-run federally funded program that pays for medical assistance for certain children, and individuals who are aged, blind, or disabled with limited income and assets. Eligibility for both SSI and Medicaid is based, in part, on the amount of the applicant’s assets.

In order to qualify or maintain eligibility for Medicaid or SSI an individual may transfer his or her excess assets to a Special Needs Trust, without an imposition of a transfer penalty if the individual is under the age of 65. If an individual is over the age of 65, then a transfer of funds to a pooled trust / special needs trust will impose a period of ineligibility for Medicaid, which is discussed in further detail below.

There are two types of special needs trusts established with the assets belonging to the beneficiary. These trusts are established under sections (d)(4)(a) and (d)(4)(c) of the Omnibus Reconciliation Act of 1993 and are often referred to as “OBRA” trusts. Both trusts are irrevocable, are established with and hold the assets of the beneficiary, and serve to qualify the beneficiary and maintain his or her eligibility for public benefits.

Special Needs Trusts for People Under Age 65

The first type of trust, the (d)(4)(a) trust, may be established by a parent, grandparent, guardian, court, or the individual who has a disability. The beneficiary must be under the age of 65 years and no assets may be added to the trust after the beneficiary turns the age of 65. The trustee may be an individual or corporate trustee.

Special Needs Trusts for People Over Age 65

The second type of trust, the (d)(4)(c) trust, must be established by a parent, grandparent, guardian, court or by the person with the disability. These trusts are referred to as “pooled trusts” because the assets of the beneficiary are “pooled” together with the assets of other individuals for investment purposes. A pooled trust is administered by a non-profit organization trustee usually partnered with a corporate trustee. Each individual has his or her own sub-account within the trust, but the pooling of assets allows for more investment opportunities than the more traditional trust. On July 1, 2012, the “SMART ACT’ was established in Illinois, which greatly restricted the use of pooled trusts for people over age 65. This Act stated that any funding to a pooled trust account for individuals over the age of 65 will be considered a “transfer of asset for less than fair market value” which will result in a period of ineligibility for Medicaid. The only exception to the transfer penalty is if the individual is a ward of the State or the County Public Guardian, in which case no transfer penalty will be imposed.

What Can The Funds in the Special Needs Trust Funds Be Used For?

The trustee must use the funds in the special needs trust solely for the beneficiary, but funds may not be distributed directly to the beneficiary. The trustee is prohibited from making gifts or purchasing items for an individual other than the beneficiary. For example, birthday gifts for the beneficiary’s family are not allowed. Generally speaking, the funds held in a special needs trust may be used for those items that Medicaid and SSI do not pay for. Clothing, companion care, attorney’s fees, taxes, payment of debts, furniture, and transportation are only some examples of potential items that may be paid for by the trust. The trust funds are generally not used to pay for medical care or nursing home room and board, which are paid for by Medicaid.

The trustee of the special needs trust communicates with the beneficiary, the beneficiary’s family, agent or guardian to effectively administer the trust and ensure that the beneficiary’s needs are being met. Upon creation of the pooled trust, a personal representative is designated for the beneficiary. The family member or personal representative may contact the trustee to request that funds be disbursed for a particular item. Alternatively, the relative or personal representative may purchase the item for the beneficiary and then submit the receipt to the trustee for reimbursement.

What is the Cost of a Special Needs Trust?

There is a cost associated with establishing and administering both types of Special Needs Trusts. An attorney must be hired to draft the necessary trust documents, and the trustee will usually assess an annual fee based on a percentage of the individual’s trust assets. However, the financial benefit to the beneficiary and his family usually outweighs such cost. A corporate trustee brings investment expertise and experience with government benefits. Additionally, the government is essentially paying for the beneficiary’s care while allowing the beneficiary to keep and use his assets to better his standard of living. The individual’s alternative to the Special Needs Trust would be to use all of his funds toward the cost of his care in order to become eligible for Medicaid. Once eligible, the individual would not have any funds available for his ongoing needs.

What Happens to the funds in the Special Needs Trust when the Beneficiary Dies?

Upon the death of the beneficiary, the remaining funds left in the trust are used to pay back the State of Illinois for the amount paid by the State for the medical benefits and services provided during the beneficiary’s lifetime. The trust never has to pay back more than what is left in the trust at the beneficiary’s death, and the beneficiary’s family is not responsible for the difference. Because the State is paid back at the lower Medicaid rate, and not the private pay rate, the payback amount can be significantly less than the amount the individual would have paid if they had paid privately. At death, if the amount owed to the State is less than what is left in the trust, the remaining funds may be distributed to remainder beneficiaries, such as the individual’s family, friends, or charities. Some pooled trusts also require that a portion be retained by the non-profit trustee.

This information is not to be considered legal advice. If you have questions about Special Needs Trusts, please contact us.

A Checklist For Beginning Estate Administration

A Checklist For Beginning Estate Administration


  1. Important Papers: Locate and review all of the decedent’s important papers as soon as possible after death. Important papers include funeral arrangements, anatomical gift directions, deeds, accounts & investment statements, wills, trusts, land trusts, gift list that may be referred to in a will or trust document, bonds, stock certificates, insurance papers for home and auto, etc.
  2. Anatomical Gifts: Did the decedent make an organ donation by will or by other written instrument (such as a power of attorney for health care)? If not, then relatives in the following order of priority may make such a donation: spouse, adult child(ren), parent(s), adult sibling(s), guardian of the person.
  3. Funeral Arrangements: If the decedent hasn’t expressed instructions for burial (either in the will or with family members), then the right of burial rests with the heirs in the following order of priority: spouse, children, parents, siblings. Payment for funeral expenses falls first to the decedent’s estate then to a legally responsible relative or to the Veteran’s Administration. If none of these groups can take responsibility for funeral expenses, then the Illinois Department of Human Services will pay a limited amount for the funeral burial space and cemetery charges.
  4. Death Certificates: Obtain several certified copies of the decedent’s death certificate. These may be obtained directly from the funeral home or from the Health Department/Register of Deeds/County Recorder in the county where the death occurred.
  5. Property: Secure the property of the decedent by locking up the decedent’s real estate and, if necessary, notifying insurance carriers that the decedent’s possessions should be insured as vacant property.
  6. Does a will exist?
    1. Yes. Obtain the original document and contact the executor named to manage the estate. A will must be filed with the Clerk of Court of the county in which the decedent resided at the time of his or her death or the county in which the substantial part of the estate rests.
    2. No. In this case, the decedent’s estate (not including joint tenancy or trust property) will be distributed according to the State of Illinois rules of descent and distribution found in the Illinois Probate Act, Section 2-1 as follows:
      • If a spouse and children of deceased survive decedent, then ½ to spouse and ½ to children in equal shares after all estate debts, taxes and expenses are paid.
      • If only a spouse and no children survive the deceased, then all to the spouse.
      • If only children and no spouse survive the deceased, then to the children in equal shares.
      • If no spouse or children, then one share to each parent and siblings who survive decedent and double shares where only one parent survives decedent.
  7. Trusts and Other Estate Distribution Documents: If a trust exists, contact the trustee or successor trustee if the decedent was the trustee. Successor trustees will need to locate all assets in the trust and change the name of the trustee with each institution or government entity.
  8. Safe Deposit Box: If the box is held solely by the decedent, an affidavit by an interested party, such as an executor or trustee, will need to be presented to the institution before entry will be permitted.
  9. General List of Assets: Create a general list of all assets owned by the decedent and the value of each on the date of the death of the decedent. Describe each asset, listing type of asset, institution, how title to the asset is held, any designated beneficiaries, contact telephone number and value. Do NOT consolidate trust with non-trust assets before consulting an attorney or accountant regarding filing an estate tax return.

This information is not to be considered legal advice. If you have questions about beginning your estate administration, please contact us.

Why Engage An Elder Law Attorney To Prepare Your Medicaid Application?

Why Engage An Elder Law Attorney To Prepare Your Medicaid Application?

The Illinois Medical Assistance Program (“Medicaid”) is the health care program for individuals who do not have another form of insurance or whose insurance does not cover what they need, such as nursing home or supportive living care. A significant number of people must look to Medicaid to pay for their nursing home and supportive living care. However, the eligibility rules are complicated for applicants for Medicaid long term care.



Thorough review of financial records to identify potentially problematic transactions

Illinois Medicaid applications for nursing home or supportive living care are subject to enhanced scrutiny. An attorney will review the 60 month transaction period for issues that may affect the approval of the application and will either advise corrective action or, if it should not affect eligibility, present the transaction in such a way that it will not disqualify the applicant.

For example, certain cash transactions, reimbursements, payments to caregivers, wedding or graduation gifts, or other seemingly harmless transactions can become problematic unless properly presented.

Provide planning options

An attorney will be able to properly advise as to how excess assets can be utilized for the benefit of the applicant or his or her family without disqualifying the applicant.

For example, there are specific rules which can help protect a spouse in the community, certain trusts which can help preserve resources, and certain exceptions for individuals who have disabled children.

Advocate for you

The process of applying for Medicaid can be long and demanding. An attorney can act as your advocate and take some of the stress off of you. In addition, the attorney can serve as the main contact with the Medicaid agency and the applicant’s facility.

Provide correct information regarding the application process and the Medicaid rules

Non-attorneys seldom have sufficient knowledge about the eligibility rules and the exceptions and often times provide incorrect information to the detriment of the applicant. Since the Medicaid rules are subject to change, it is important to have the most current information on the process and rules. In addition, it is more cost effective and efficient to have an application properly reviewed prior to being submitted, as opposed to supplementing an application after the fact.

Attorney fees are allowable as a means of spending down excess resources

Excess assets will need to be spent prior to Medicaid eligibility. If the attorney’s assistance can accelerate eligibility by even one month that will generally cover the fee. Additionally, payments of attorneys’ fees from the assets of the applicant are allowable and in most circumstances those assets will otherwise be paid to the nursing home.

This information is not to be considered legal advice. If you have questions about it please contact us.

Illinois’ Medicaid Long Term Care Eligibility Rules

Illinois Medicaid Long Term Care Eligibility Rules


In January, 2012, new regulations became effective in Illinois substantially changing eligibility for Medicaid coverage of long-term care. Although effective in January, the local offices of the Illinois Department of Human Services, the agency making determinations of eligibility for Medicaid, did not implement these new regulations until July, 2012. Additionally, in June of 2012, Governor Quinn signed into law Medicaid reform, the STAMP Act, which also made several significant changes to eligibility for Medicaid long term care coverage. Both the new regulations and the STAMP Act were implemented on July 1, 2012. Highlighted below are the most significant changes to eligibility for long term care Medicaid coverage.

The Medicaid Long Term Care Coverage “Look Back” is Extended to 60 months

To qualify for Medicaid coverage for nursing home, supportive living, or the community care program, an applicant is required to document that they did not make any transfers of assets for purposes of qualifying for Medicaid during the applicable “look back” period. Until January, 2012, the look back period was 36 months. The regulations effective in January, 2012, changed the look back to 60 months. However, it was not implemented until July, 2012.

All applicants for Medicaid long term care coverage who filed on or after July 1, 2012, are required to produce monthly statements for all assets held during the 60 months prior to the date of the Medicaid application.

All Non-Allowable Transfers Made During the 60 Month Look Back are Aggregated for Purposes of Determining a Penalty Period of Ineligibility for Medicaid

Regulations effective in January, 2012, changed the method by which the Department penalizes an applicant for long term care Medicaid who transferred assets during the look back period. Unlike prior regulations, the new regulations require the Department to add together all transfers made during the look back period and use the total amount when calculating the penalty caused by the transfer. These new regulations were not implemented at the local office level until July, 2012.

A Non-allowable Transfer Made During the 60 Month Look Back Results in Future Ineligibility for Long-Term Care Medicaid coverage

The Department imposes a penalty period of ineligibility for Medicaid coverage for any non-allowable transfers which occur during the look back period. Under prior regulations, the penalty period began with the month of the non-allowable transfer. Under new regulations, the penalty period, consisting of a number of months and partial months of ineligibility for Medicaid, does not begin until the month that the applicant is receiving long term care services and is eligible for Medicaid based upon an application which is approved but, except for the imposition of the penalty period. In other words, a person who gave away assets does not begin the penalty period of non- eligibility for Medicaid until they are receiving nursing home care, supportive living or community care services, and have no assets other than Medicaid exempt assets.

For example, Mary Smith, in December of 2011, gave each of her two children $12,000.00 In April of 2012, she gave each of her 4 grandchildren $3000.00 She lives in a nursing home costing $6000.00 per month and applies for Medicaid, and is determined eligible (but for the penalty period) in July, 2012. Under the old rules, Mary would have incurred a four month penalty ($24,000.00 ÷ $6000.00 = 4) for the gifts to her children in

December of 2011, beginning in December, 2011, and expiring March, 2011. She would have incurred a 2 month penalty ($12,000.00 ÷ $6000.00 = 2) for the gifts to her grandchildren in April, 2012, beginning in April and expiring in May, 2012.

This information is not to be considered legal advice.  If you have questions about it, please contact us.

The Difference Between Medicare And Medicaid

What’s The Difference Between Medicare and Medicaid?

Medicare and Medicaid sound alike, and many people use them interchangeably. However, they are very different programs. Medicare is a federal program that provides health coverage to insured workers who are age 65 or older or who have a disability. Medicaid is a state and federal program that provides health coverage to persons with low income and, for some Medicaid programs, limited assets. Also, unlike Medicare, which is totally federal, Medicaid is a joint state-federal program. Each state operates its own Medicaid system, but this system must conform to federal guidelines in order for the state to receive federal money, which pays for about half the state’s Medicaid costs.

Medicare and Medicaid Coverage of Long-Term Care

One of the major differences between Medicare and Medicaid is in the context of coverage of long-term care services. Medicaid covers nursing home care for qualified persons. Medicare, however, for the most part, does not cover nursing home care. Medicare Part A covers only up to 100 days of skilled care in a “skilled nursing” facility per spell of illness. The care in the skilled nursing facility must follow a stay of at least three “midnights” in a hospital. And for days 21 through 100, you must pay a copayment of $194.50 in 2022 ($185.50 in 2021). (This may be covered by Medicare supplemental insurance.)

Because of the lack of Medicare coverage and the high cost of nursing home care, Medicaid has become the default nursing home insurance program. Most people pay out of their savings for long-term care until they become eligible for Medicaid.

Medicare does not cover assisted living or custodial home care (assistance with feeding, dressing, toileting, bathing and moving around). It will provide limited skilled services in the home.

In Illinois, Medicaid does pay for some home care (usually not more than 20 hours a week) through the Illinois Community Care program administered by the Department on Aging.

It also covers assisted living through its Supportive Living certified facilities. Medicaid will not cover live-in caregivers.

When you have questions related to elder law, estate planning, probate, and guardianship, think of the attorneys at Dutton Casey & Mesoloras. With over 165 years of combined legal experience, you can depend on our team for the knowledge, advice, and support you deserve to resolve your legal needs.

This information is not to be considered legal advice. If you have questions about the differences between Medicare and Medicaid in relation to long term care, please contact us.


Community Care Program

Supportive Living Facilities


National Elder Law Foundation

National Academy of Elder Law Attorneys

The Presumptively Void Transfers Act

Another Tool To Protect Vulnerable Adults

It might be too late to assist the family of Ernie Banks, whose will was changed in 2014 to the benefit of his caregiver, but this statutory tool will protect others from being victimized by non-family caregivers of persons requiring care. Attorney Janna Dutton, an active advocate for vulnerable adults for over 30 years, as a member of the Illinois National Academy of Elder Law Attorneys wrote a new section of the Probate Act, “Presumptively Void Transfers” Public Act 098-1093.

Signed by the Governor in August, 2014 and effective January 1, 2015, the purpose of the Presumptively Void Transfers act is to prevent non-family caregivers from taking advantage of the persons they are caring for by influencing them to make a will or sign other legal instruments which transfer property to the caregiver at the person’s death. Basically, the statute provides that, if a “transfer instrument” is challenged by another person (likely a family member of the deceased person) in a court proceeding, there is a presumption that the instrument is void if the beneficiary is a “caregiver” and the transfer exceeds $20,000.00.

Under the statute, a person is considered a caregiver if they are providing assistance with activities of daily living to another person, whether paid or unpaid. Close family members are not considered to be caregivers even if they are providing care.

Under the Presumptively Void Transfers statute, once the presumption is in place, the transfer instrument remains effective only if the caregiver-beneficiary can prove one of the following:

  1. The caregiver-beneficiary proves by clear and convincing evidence that the transfer was not the product of fraud, duress or undue influence; or
  2. By showing that the beneficiary’s share under the transfer instrument is not greater than the beneficiary’s share already in effect prior to becoming a caregiver.

If the presumption is present and the caregiver was not previously in the deceased person’s estate plan, the transfer instrument is void and ineffective if the caregiver is unable to prove the will or other instrument was written (or changed) entirely independently of the caregiver’s assistance or influence.

If the Presumptively Void Transfer Statute was applicable to Ernie Banks’ Will signed in 2014 shortly before his death, his family would have a much easier time undoing the Will. To preserve the new Will, the caregiver would be required to prove Ernie Banks changed his Will entirely independently of her. Given the facts reported in

the press, that Mr. Banks had dementia and used the services of a new attorney instead of his long time estate planning attorney, it appears that would be unlikely.

To Read the Act; please go here

This information is not to be considered legal advice. If you have questions about this topic, please contact us.


National Elder Law Foundation

National Academy of Elder Law Attorneys

Adult Guardianship Facts

Adult Guardianship Facts

What is a Guardian?

A guardian is a person, institution or agency appointed by the Probate Court to manage the affairs of a person with a disability.

Who May Need a Guardian Appointed to Manage Their Affairs?

The law presumes that an adult eighteen years of age or older is capable of handling their own affairs. A guardian may be appointed to serve as a substitute decision maker if a person is disabled because of

    1. mental deterioration,
    2. physical incapacity,
    3. mental illness, or
    4. developmental disability. The disability must prevent the person from making or communicating responsible decisions about their personal and/or financial affairs.

A guardian may also be appointed if, because of “gambling, idleness, debauchery, or excessive use of intoxicants or drugs”, a person spends or wastes their estate so as to expose themselves or their family to want or suffering.

What are the Steps in the Guardianship Process?

In Illinois, the only way to become guardian for an adult with a disability is to be appointed by the Circuit Court. A minor’s guardianship ends automatically when the child turns eighteen, and an adult guardianship will be necessary if the person who has reached majority still needs a personal and/or financial decision maker.

The procedures for obtaining a court-appointed guardian are set forth in Section 11a of the Illinois Probate Act, 755 ILCS 5/1-1 et seq. Each county circuit court may also have its own practices or rules.

Preliminary Steps

Before starting a court proceeding, one must obtain a Report of Physician certifying that the person is disabled and needs a guardian. The report must be completed and signed by a licensed physician who has evaluated the alleged person with a disability or Respondent within 90 days of the filing of the Petition for Appointment of Guardian. The person(s) who author and sign the report may be needed later to testify in court. It is important that the report contain all of the information required by paragraph 11a- 9 of the Probate Act:

    1. a description of the nature and type of the respondent’s disability, and an assessment of how the disability impacts on the ability of the respondent to make decisions or to function independently;
    2. an analysis and results of evaluations of the respondents mental and physical condition and, where appropriate, educational condition, adaptive behavior and social skills, which have been preformed within 3 months of the date of the filing of the petition;
    3. an opinion as to whether guardianship is needed, and the reasons therefore;
    4. a recommendation as to the most suitable living arrangement and, where appropriate, treatment or habilitation plan for the respondent and the reasons therefore;
    5. the signatures of all persons who performed the evaluations upon which the report is based, one of whom shall be a licensed physician and a statement of the certification, license, or other credentials that qualify the evaluators who prepared the report.

The more detailed the report, the more likely it will contain all of the information legally required for the court’s decision. Since many Illinois physicians are unfamiliar with limited guardianship, it is important for the petitioner or their attorney to fully explore the potential for limited guardianship in each case regardless of the initial recommendation of the physician. Total (plenary) guardianship should only be used when the person with disabilities is so incapacitated that they truly cannot make any decisions themselves. The report should accurately reflect the skills and abilities of the person as well as deficits and problems.

Attorney Representation and Other Protections

Although an individual seeking guardianship of the person only may do so without the use of an attorney, the advice of legal counsel may be beneficial. The court requires a guardian of estate to be represented by counsel.

An alleged person with a disability or Respondent has the right to a court appointed attorney and a trial by a jury of six persons. A Respondent also has the right to request an independent medical evaluation, which will be paid from the funds of the Respondent, should they have sufficient assets.

Guardians ad Litem

Most counties in Illinois require the appointment of a guardian ad litem, generally an attorney who is charged with informing the Respondent of the all pending guardianship petitions, informing a Respondent of their rights and inquiring whether the Respondent agrees or objects to the guardianship. The Court also looks to the guardian ad litem to advise it concerning the apparent need for guardianship. It is the duty of the guardian ad litem to report to the court concerning the respondent’s best interests. Although the process described in the Illinois Probate Act anticipates the appointment of guardians ad litem in all cases, many probate courts will waive this requirement if the Respondent appears in person and states they do not object to the appointment of a guardian.

The guardian ad litem must meet with the respondent and tell him about the pending guardianship proceedings, and try to determine the respondent’s position with respect to being adjudicated disabled, the proposed guardian, any changes in residential placement, changes in care that may result from the guardianship, and whatever else the court may deem appropriate. The guardian ad litem files a written report and appears and testifies concerning the appropriateness of guardianship. It is good practice for the petitioner of the petitioner’s attorney to discuss the guardianship case with the guardian ad litem prior to the court hearing.

Court Procedures

A Petition for Appointment of Guardian is filed with the Probate Court Clerk, usually along with the report of the physician. A fee will be charged for the filing of the case. The summons, with a copy of the petition attached, is stamped by the clerk and is given to the sheriff or special process server to personally serve the Respondent.


Notice must be sent to certain individuals, with a copy of the petition attached. This includes the proposed guardian, family members, the person with whom the alleged person with disabilities resides, as well as any current, acting guardian of the alleged disabled person.

A hearing date should be set by the court clerk or the judge within 30 days of the filing of the petition, but can be up to 6 weeks.

At the guardianship hearing, it may be necessary to have at least one witness to testify in support of the need for guardianship. In Cook County witnesses are rarely called unless the Respondent contests the appointment of a guardian, or some other unusual circumstance exists. In other counties the judge may require a witness to prove the case even if there is no contest. The doctor is not required to testify unless the court requires it.

The alleged person with disabilities is entitled to attend the hearing. If the person wishes to attend, but has difficulty with mobility or transportation, the court and guardian ad litem should be advised.

Can Guardianship be Used in the Case of an Emergency?

Yes, when the court determines that emergency protection is warranted, a temporary guardian may be appointed. If there is an emergency situation requiring a guardian to be appointed before the hearing on the guardianship petition can be completed, one can ask the court to appoint a temporary guardian until the hearing. A petition for temporary guardianship should be prepared, along with a proposed order for the judge to sign. The court must designate what, if any, notice shall be given, how, and to whom. The court can then appoint a temporary guardian with very specific powers and duties written into the order. The temporary guardianship expires automatically when a permanent guardian is appointed, the guardianship petition is dismissed, or in 60 days, whichever comes first. A temporary guardianship is appropriate only if there is a substantial need. In determining the necessity for temporary guardianship, the immediate welfare and protection of the alleged disabled person and his estate shall be of paramount concern, and the interests of the petitioner, any care provider, or any other party shall not outweigh the interests of the alleged disabled person.

Living Wills, Power of Attorney, Surrogate Decision Makers, and Other Alternatives to Guardianship

Guardianship can be the most restrictive alternative available to a person in need of personal or financial assistance. Guardianship always means the involvement of a court, with the likelihood of a public examination of one’s private affairs. All possible alternatives should be explored before instituting guardianship proceedings. Competent medical and legal professionals, social workers, caretakers, family and friends should consult and agree on a suitable course of action whenever possible.

There are less restrictive means by which someone may act as a surrogate decision maker, including Powers of Attorney, Living Wills, Mental Health Declarations and the Health Care Surrogate Act. A private attorney should be consulted to better understand the nuances of powers of attorney and other types of surrogate decision making.


Who May Act as a Guardian?

Any person at least 18 years of age who is a resident of the United States, has not been convicted of a felony (there are exceptions to this) and has not been adjudicated a person with a disability themselves, may be named guardian of the person or estate of an adult with disabilities. The person must demonstrate to the court an ability to provide an active and suitable program of guardianship.

Any agency, public or private, may serve as guardian of the person or estate, if the court finds that it is capable of providing an active guardianship program. A banking institution may be appointed guardian of the estate but not guardian of the person.

What Types of Guardianship are Available Under Illinois Law?

There are several types of guardianship available under the Illinois Probate Act. It is important that all available options be considered to determine the appropriate form of guardianship for a specific person with disabilities. In each case, consideration should be given to requesting either limited or plenary guardianship. Limited guardianship is used when the person with disabilities can make some, but not all, decisions regarding their personal care and/or finances.

The basic forms guardianship can take follow:

  1. Limited Guardianship – used when the person with disabilities can make some, but not all, decisions regarding their person and/or estate. The powers of a limited guardian must be specifically listed in the court order. Limited guardianship may be used to appoint a limited guardian of the person, a limited guardian of the estate, or both.
  2. Plenary Guardianship – used when the “individual’s mental, physical and adaptive limitations” necessitate a guardian who has the power to make all important decisions regarding the individual’s personal care and finances. Plenary guardianship may be used for the person, the estate, or both.
  3. Temporary Guardianship – used in an emergency situation. Temporary guardianship can last no longer than 60 days and is a means to assure that the person who evidences need for guardianship receives immediate protection.
  4. Successor Guardianship – used upon the death, disability, or resignation of the initially appointed guardian, when guardianship is still needed.

This information is not to be considered legal advice. If you have questions about it, please contact us.