Employment and Eligibility for Public Programs 

Work Incentives Benefits Specialists can advise your family and young adult who has a job or wants to work in the future, how they can earn money and keep their public benefits. There are ways for families to get benefits counseling through the programs that your youth is probably already enrolled in, including:

• • • Division of Vocational Rehabilitation (DVR): This service can be added to the Individual Plan for Employment (IPE)
    • Children’s Long-Term Support (CLTS), Family Care or IRIS: Add service to the long-term care service plan
    • If DVR or long-term care are not an option, the Work Incentives Planning and Assistance (WIPA) program provides services at no-cost to people who have a job or are looking for work.

Learn More: Before Age 18 – Benefits and Working: beforeage18.org/benefits-and-working

Financial Tools to Keep Eligibility

Special Needs Trusts (SNTs) and Achieving a Better Life Experience (ABLE) accounts are tools used to maintain a person’s eligibility for public programs if a Medicaid or SSI recipient has income over the allowable level, assets over a given amount, or is expected to receive money through an inheritance. 

Achieving a Better Life Experience (ABLE)        

• • • ABLE accounts are special savings accounts that give people with disabilities and their families a way to save for future expenses without affecting their eligibility for SSI, Medicaid or other means-tested programs. These accounts are similar to college savings plans – 529 accounts.
    • Family and friends can deposit up to $20,000 per year, adjusted annually. A total of $100,000 or more, depending on a person’s situation, can be deposited before SSI benefits are impacted (this changes annually). ABLE account funds can only be used for qualifying expenses like a person’s living, working, transportation, direct support, healthcare, or other needs.
    • Wisconsin does not have its own ABLE Program however, legislation passed in 2024 required the Department of Financial Institutions to either set up an independent state ABLE Program or establish an agreement with another state. Until that time, ABLE programs in other states that allow consumers from out-of-state to open accounts are an alternative for Wisconsin residents. See the Family Voices ABLE Account fact sheetand ABLE National Resource Center (ablenrc.org)

Special Needs Trusts (SNTs) 

SNTs can be created for a youth or adult with disabilities. Assets in the trust are not counted toward Medicaid or other means-tested programs. Families can set up individual SNTs by working with attorneys or financial planners who specialize in creating first-party or third-party trusts.

• • • First party trusts are funded with the assets of the person with disabilities. For example, funds from a settlement from an injury, lawsuit or inherited funds. These trusts have a “Medicaid Payback provision,” meaning that when the person passes away the state Medicaid program can be reimbursed for expenses they covered during that person’s life.
    • Third-party or community trusts are funded with assets owned by people other than the person with disabilities, such as a parent or a grandparent, and do not have a Medicaid Payback provision.

• • • Pooled Trusts are another option for families. A nonprofit organization that administers trusts on behalf of many participants combines or “pools” the assets of many beneficiaries for investment purposes. Management and setup fees are usually less expensive than individually organized trusts. Wisconsin has two options for setting up pooled SNTs, Wispact (wispact.org) and Life Navigators (lifenavigators.org/trust-program).

Learn More: 

Special Needs Alliance: Special Needs Trust 

Wispact: What is a Trust?

Planning for Long-Term Care Needs

Your financial planning needs to include the direct care needs of your child or young adult now and in the future. Learn about public programs like Family Care or IRIS that can pay for the direct care and support needs of adults with disabilities. To qualify for Family Care or IRIS, the person must be covered by Medicaid. Supplemental Security Income (SSI) is a common way for a person with disabilities to gain Medicaid coverage.

Learn More: 

FamilyCare: dhs.wisconsin.gov/familycare/index.htm                                                                                              

IRIS: dhs.wisconsin.gov/iris/index.htm

Plan to Support Decision-Making 

Your family’s financial planning should also include a discussion about your young adult’s ability to manage their own finances and make financial decisions, like signing contracts. For a young adult who may need limited support to pay bills, manage a bank account, or debit or credit cards a Supported Decision-Making Agreement or Power of Attorney for Finances may be good tools to consider. Families may choose to petition for Guardianship of a person who is not able to make informed decisions. This is the most restrictive tool for your youth and families should think carefully about its benefits. 

See: Supported Decision-Making Fact Sheet and Supported Decision-Making Toolkit

Do I Need to Work with a Professional?

Some families find meeting with a financial advisor and/or an attorney very helpful. If you feel you need the help of a professional, we recommend finding one who has experience and is knowledgeable about special needs planning. Some professionals may offer reduced fee consultations or assist your family in a limited way if cost is a barrier. 

Learn More:

Academy of Special Needs Planners                                                                                                                

Special Needs Attorneys in Wisconsin – SNA (specialneedsalliance.org)

**Note: Many of the tools and resources shared here do not require a professional and can be completed on your own. 

INFORMATION AND RESOURCES

Wisconsin Wayfinder: Children’s Resource Network, 877-WiscWay (877-947-2929):  Wisconsin Wayfinder offers families one name and phone number to find services for children with special health care needs. Wayfinder connects you to a resource guide at one of the five Children’s Resource Centers in your area.

Do you need a resource in another format or a printed copy? Contact Lynn@fvofwi.org.