I am seeking extensive support to advocate for a change that would enable parents of children with profound special needs or disabilities to receive compensation as caregivers.

A little back story as to why I am creating this petition in order to make a change.

My youngest daughter, who is 12 years old, faces significant challenges due to profound autism, nonverbal communication, severe OCD, PICA, and a profound developmental disability. Her condition leads to extreme aggression, both towards herself and others who approach her. We have sought assistance from respite care services, but they often call us back within minutes of leaving, unable to manage her significant needs. While we understand the difficulties posed by her condition, it raises the question: why are parents not compensated for providing care at home?

Unfortunately, Wisconsin Medicaid regulations do not permit parents of children with disabilities to receive payment for their caregiving efforts. My daughter has faced rejection from special needs schools designed for children with similar challenges due to the severity of her needs. Various professionals, including those from Health & Human Services, doctors, psychiatrists, and mental health facilities, have observed her behavior and acknowledged that her case of autism is among the most severe they have encountered.

This scenario is not uncommon. Numerous families throughout Wisconsin encounter comparable challenges as a result of these stringent policies. Data from the U.S. Census Bureau indicates that around 6% of children in Wisconsin have a disability. This translates to thousands of families who may be confronted with the difficult decision between maintaining financial stability and providing personal care for their child.

Finding suitable care for special needs children is particularly challenging, especially in rural areas. Numerous children need a minimum of 40-60 hours of care weekly, with some needing significantly more. However, these required hours frequently remain unfulfilled due to a shortage of available caregivers, compelling parents to make difficult decisions between maintaining their jobs and providing care for their child. There are instances, such as with my daughter, where her needs are so substantial that "professional" caregivers refuse to assist her, viewing her as a liability. This situation leaves me with no option but to remain at home to care for her.

 I am submitting this petition with the aim of advocating for a bill in the Senate that, if enacted, would ease the challenges encountered by parents of children with significant special needs or disabilities. Numerous states, including Minnesota, California, New Jersey, New York, Ohio, Oregon, Pennsylvania, South Dakota, Tennessee, and Washington, have already established measures to provide financial compensation to parents who care for their special needs children.

Wisconsin provides financial assistance to parents who care for their adult children with special needs; however, this support does not extend to minor children with similar needs. This disparity is inequitable. If the state cannot guarantee consistent and sufficient care, parents ought to receive compensation for their caregiving responsibilities.

Raising a child with severe special needs can incur substantially higher costs compared to raising a typical child, as indicated by available data. Estimates suggest that an average annual income of approximately $60,000 or more may be required, depending on the child's specific needs. Additionally, some sources estimate that the lifetime expenses associated with raising a child with severe special needs could amount to millions of dollars.

The daily responsibilities of caring for a child with profound autism encompass a range of essential tasks. These include assisting with fundamental needs such as dressing, bathing, feeding, and toileting, as well as managing sensory sensitivities and establishing structured routines. Caregivers implement behavior management strategies, coordinate therapy sessions, and remain vigilant for potential safety issues. Advocacy for the child's needs across different environments is crucial, alongside the creation of a safe and predictable atmosphere. This role demands considerable patience and consistent support due to the child's significant communication and social difficulties. Alternative communication methods, such as picture boards or assistive technology, are often employed. Caregivers also address challenging behaviors, including self-stimulation, aggression, or meltdowns, using appropriate interventions. Monitoring for medical concerns, such as seizures or other health issues, is essential, as is the administration of prescribed medications. Effective communication with school personnel is necessary to ensure suitable accommodations and support, while collaboration with healthcare providers helps in developing a tailored treatment plan. 

Parents of children with profound autism frequently endure considerable stress, anxiety, feelings of isolation, grief, and a sense of helplessness. These emotions stem from the difficulties associated with managing unpredictable behaviors, overcoming communication barriers, and addressing overwhelming needs. They often find themselves preoccupied with concerns about their child's future and struggle to provide what they perceive as a "typical" life. This situation can create tension within family relationships and diminish the overall quality of life for the parents. Many parents face these challenges while also trying to care for other family members, attend to their own needs, and maintain employment, if they have not already had to leave their jobs to focus on their child. This raises the pressing issue of how to sustain financial stability when work is not an option.

The circumstances for families with children who have profound autism are expected to deteriorate as states implement measures to reduce Medicaid expenditures. Families caring for children with disabilities often experience heightened levels of financial hardship and deprivation, which can negatively impact the well-being of these children. Therefore, it is essential for policymakers to explore strategies to enhance Medicaid and alleviate the financial challenges faced by these families in providing care for their children with profound autism. 

Parents of minors are prohibited from working as caregivers when their children are minors, but parents of adult children are not. We need employment parity!

Parents caring for their children are often forced to leave the workforce to provide this extraordinary care without compensation, leaving the entire family struggling financially. 

Parent caregivers of children with developmental disabilities are struggling to gain eligibility to work as paid caregivers. In 2020, 38 states provided this support during the public health emergency, and due to its success, 27 states have made it a permanent program.

We advocate for the right of parents to offer professional care for their disabled children at home while maintaining their financial stability. This adjustment would enhance the emotional and financial well-being of families.

It is essential to acknowledge that parents can deliver high-quality care, often surpassing that of professional caregivers, when they are afforded the appropriate support and compensation. We call on Wisconsin lawmakers to revise Medicaid regulations to allow parents to be compensated for delivering essential in-home care services.

To advocate for this important change, I kindly ask you to sign this petition. My goal is to gather as many signatures as possible. Together, we can make a difference!