What are the Issues?

WHY IT’S IMPORTANT: Family Care is Wisconsin’s managed care Medicaid Home and Community Based Service (HCBS) waiver that help people with disabilities and older adults live their lives in the community, not nursing homes and state-run institutions. People with intellectual and developmental disabilities (I/DD) have equivalent lifespans to able-bodied adults and are part of the aging demographic who will also have increased needs for HCBS. The state’s investment in-home HCBS supports and services keeps people out of much higher cost congregate residential settings and Medicaid funded institutional settings.

What is needed:

Greater transparency and oversight over private-equity firms and multi-state or national for-profit corporations that now own or operate HCBS providers, services, and programs.

• Transparency, including who owns the setting or service, profit margins, and spending on staff salaries, care services, building maintenance, and administration.
• For services and settings owned by multi-state companies, information about their performance in other states, including rights violations, critical incidents, fines, corrective action plans or other sanctions, contractual relationships, and direct service staff turnover.

More investment in in-home supports, not congregate services

• Move away from congregate settings and high-cost congregate service models, and to ensure people with disabilities and older adults—including those with complex care needs—can live the lives they want in the community.

WHY IT’S IMPORTANT: IRIS is Wisconsin’s self-directed Medicaid Home and Community Based Service (HCBS) waiver that help people with disabilities and older adults live their lives in the community, not nursing homes and state-run institutions. IRIS empowers members to hire their own workers within a set budget that is based on an assessment of their level of care needs. The state’s investment in-home HCBS supports and services keeps people out of much higher cost congregate residential settings and Medicaid funded institutional settings.

Make it simpler to self-direct

• Streamline paperwork and processes so IRIS participants have the flexibility to easily change schedules, onboard new caregivers or temporary fill-in workers, and can move money within their budgets quickly and efficiently.

Make sure that efforts to increase compensation for paid care workers apply to IRIS (not just Family Care)

• Specifically direct DHS to establish a mechanism to distribute funding intended to increase worker wages for workers serving IRIS participants. Past legislative efforts to increase care worker wages have been directed to the Family Care program.

WHY IT’S IMPORTANT: The Children’s Long Term Support (CLTS) program helps children with significant disabilities live at home with their families instead of in hospitals or state-run institutions.

What is needed:

Children can’t wait

• Almost 2,000 children eligible for CLTS continue to wait to get into the program; CLTS should have sum sufficient funding like the adult Family Care and IRIS so all eligible children can get the supports they need.

WHY IT’S IMPORTANT: People with disabilities in Family Care, IRIS, and the Children’s Long Term Support program (CLTS) rely on paid direct support and personal care workers get out of bed, stay clean, and eat. Family Care, IRIS, and CLTS waivers were started to make sure people could live in their own homes and stay out of much more expensive Medicaid-funded nursing homes and DD Centers. Today, 83,000 adults and 23,000 children live in their communities instead of institutions. A dedicated workforce providing in-home care and services is needed so people can continue to live and contribute to their communities.

What is needed:

Better pay for workers.

• Start a specific fund to pay care workers living wages that match pay for workers with similar health care skills and duties working in hospitals, nursing homes, and in-home care.
• Create two rates for personal care, home health care, and direct service agencies. One rate to pay for administrative costs, and the other to pay worker salaries. The legislature can then increase wages directly.

Better health care benefits for workers

• Create health insurance fund and a standard health plan for care workers so all care workers serving Medicaid participants have the same quality health care coverage no matter where they live and work in the state.

Retirement savings for workers

• State-matched retirement savings accounts for individual care workers that move with the worker workers change jobs or clients.

Paid time off for workers when they get sick

• Create a paid family and medical leave program for full and part-time workers.
• Expand who can use family and medical leave so more relatives can help care.

Creating long-term caregiving careers

• Help care workers earn heath care degrees while working for Family Care, IRIS, or CLTS participants by waiving tuition, with bonus payments if graduates continue working in Family Care, IRIS, or CLTS.

WHY IT’S IMPORTANT: Unpaid caregivers provide 80% of the care for children and adults with disabilities and older adults. Family Care, IRIS, and CLTS programs rely on unpaid labor of natural supporters, often family members and who are aging themselves, to cover the needs identified in participants’ care plans. This is not sustainable. Family Caregivers are leaving the workforce (40%) or must work part-time (another 20%) to provide care. They can’t earn as much over their lifetime, may lose employer-sponsored health care, and are less able to save for retirement.

What is needed:

Let people take time off to care

• Create a paid family and medical leave program for full and part-time workers.
• Expand who can use family and medical leave so more relatives can help care.

Let people have a break

• Increase respite funding throughout Wisconsin.

Count unpaid caregivers’ contributions

• Require reporting of how many care hours care plans assume will be covered by unpaid caregivers, and how many paid hours are unfilled or covered by unpaid care because there is no one to hire or staff does not show up.

As people with disabilities and unpaid caregivers age, make sure care in the community continues

• Create a Blue Ribbon Commission to develop policy strategies to ensure aging people with disabilities can continue living in the community as their unpaid caregivers age and become deceased.

WHY IT’S IMPORTANT: Many states have closed all their institutions for people with IDD. There are no new admissions in Wisconsin. Fewer people, 279 in 2021, are living in state-run institutions, yet the cost to keep them open is growing, now more than 138 million per year in Fee for Service dollars alone. It takes almost 14-hundred state employees to run the states’ 3 remaining institutions.

What is needed:

Plan to reduce the number of institutions

• Plan to reduce the number of state-run institutions from three to one and end long term residential services offered by Central Wisconsin Center and Southern Wisconsin Center.
• Invest in care infrastructure in the community instead of Capitol Budget expenditures that increase institutional capacity at DD Centers.

WHY IT’S IMPORTANT: Many people with disabilities rely on programs that require poverty (strict income and asset limits) to get the care and support they need. People with disabilities on fixed incomes cannot absorb increasing rents and risk becoming unhoused, losing independent living by moving in with family members (if applicable), or being forced into congregate residential service settings. Affordable housing is a universal issue, but it threatens to result in many people with disabilities being driven into high-cost Medicaid-funded congregate settings because there is simply no place else to go.

What is needed:

Build accessible units in locations that work for non-drivers

• More older adults and people with disabilities will need accessible units. Funding for new workforce housing should require accessible units and reward developments connected to public transit and other non-driver options, safe pedestrian infrastructure, and community assets including grocery stores, retail and employment centers, and government services.

Make existing housing units accessible and safe

• Funding to update old stock housing and commercial properties should reward projects that improve building accessibility (adding ADA compliant elevators, replacing stairs with ramps etc.) and create accessible units.
• Prioritize removal of lead paint—a major source of lead poisoning and a 100% preventable cause of I/DD—asbestos, and other environmental contaminants that can harm residents of workforce housing.

Require a proportion of housing stock to accept housing vouchers, and Family Care or IRIS members

Make sure housing authorities and state consumer protection and Medicaid agencies have a unified strategy to ensure new housing developments are not segregated or institutional in nature.

WHY IT’S IMPORTANT: Students with disabilities’ futures are built on quality education. Wisconsin is now funding two separate and unequal education systems. Wisconsin has increased funding for private schools that do not have to educate students with disabilities and where families have no recourse if their student is not receiving the specialized support they need. Meanwhile, special education in public schools remains woefully underfunded.

What is needed:

Same rules for all schools

• Require private schools to meet the same standards required of public schools under IDEA.

Increase transparency, data collection, and reporting requirements for private schools

• All schools receiving public dollars should be measured the same, keep records and provide data on who applies to attend and ends up attending the school, and show how well students with disabilities are learning.

Cover the costs of educating students with disabilities

• Increase reimbursement for special education services in Wisconsin public schools to 90%.

WHY IT’S IMPORTANT: 31 percent of people in Wisconsin are currently non-drivers and these numbers are growing. Non drivers include people with disabilities, older adults, people under age 16, people over age 16 who delay or never become licensed, low-income workers who cannot afford a private vehicle and households where there are fewer cars than drivers, and drivers who become non-drivers because of increasing disability, injury, or age. Being or becoming a non-driver impacts every aspect of a person’s life—where they can live, work, whether they get health care. Most non-drivers have few transportation options and cannot affordably get where they need to go on time. There are fewer nondriver adjacent caregivers to provide rides; this demographic is also aging.

What is needed:

Create capacity for regional non-driver mobility

• Create a formula based on projected number of non-drivers and use a shared revenue mechanism to distribute funds to improve regional mobility, non-driver transportation capacity, and increase transportation options for non-drivers.

Support existing non-driver options

• Public transit, paratransit, County Elderly and Disabled Transportation Assistance and Tribal Elderly Transportation Assistance programs, and the Specialized Transportation program are core non-driver transportation options. These programs must be sustained and built upon.

WHY IT’S IMPORTANT: Wisconsin law presumes all adults are competent to make decisions about their own lives. People who make their own decisions are healthier, more independent, more well-adjusted, and safer. Unfortunately, cultural bias (ableism) assumes people with disabilities are incompetent. Too often people’s civil rights to make some or most decisions are unnecessarily taken away.

What is needed:

Better information for people with disabilities, families, and professionals

• Increase the capacity for the Guardianship Support Center to provide technical assistance to families and others about guardianship and alternatives to guardianship.

Judicial review of existing guardianships so a point in time decision does not become a lifetime restriction

• Routine review of existing guardianships every five years to reevaluate whether rights should be restored or other changes are needed.

Ability to have temporary support without permanently losing rights

• Update Temporary Guardianship statute so people experiencing temporary changes to decision-making capacity—including medically incapacitated patients who do not have a POA or Guardian of the Person and people experiencing acute or episodic health or mental health conditions—can have a decision maker temporarily appointed without permanently losing their civil rights to make their own decisions.

Remove barriers and improve access to voting for people with disabilities

WHY IT’S IMPORTANT: Nationwide, people with intellectual and developmental disabilities are 7 times more likely to be victims of abuse and neglect.

What is needed:

Make sure protections and regulations are consistent across all settings where people with disabilities live.

• Update regulations so all congregate settings, including 1-2 bed Adult Family Homes (AFHs) and new forms of congregate settings that do not fall into existing categories, are included.

Equal protection for people with disabilities

• Update statues and policies to make sure protections for people with disabilities are the same as protections for other vulnerable populations like older adults.

Increase who is listening, looking for, and responding to abuse and neglect

• Ombudsman programs, Adult Protective Services, the Division of Quality Assurance, and the Office of Caregiver Quality all need more eyes, ears, and boots on the ground to respond to increasing calls for help.

WHY IT’S IMPORTANT: People with disabilities are a valuable, largely untapped group of dedicated potential employees who can help fill Wisconsin’s workforce shortage. Businesses benefit when people with disabilities become employees, working alongside people without disabilities and contributing to their communities.

What is needed:

Modernize outdated practices

• Modernize programs to favor integrated employment outcomes.

Maximize earnings and savings without losing needed supports

• Help people with disabilities and their families understand and use work incentive programs (MAPP) and savings tools (ABLE Accounts).

Update DVR services to reflect new needs

• Prepare workers for remote employment opportunities. Center job development around the full context of the client’s life (e.g. non-driver status) so people can keep the jobs they get. Improve transition services for people with disabilities who have additional marginalized identities (e.g. person of color, LGBTQ+ etc.).