Lissa believes that our government and society needs to respect the individual dignity of all people, including those with physical, sensory, developmental, and intellectual disabilities. While 2020 marks the 30th Anniversary of the Americans with Disabilities Act, and the 45th Anniversary of what is now known as the Individuals with Disabilities in Education Act (IDEA), Pennsylvania still has work to do in its commitment to individuals with disabilities.
Lissa learned much about disability and mental health issues through her time working for Rep. Dan Miller when their office hosted an annual Disability and Mental Health Summit – an event that is now the largest event for people with disabilities, families, and service providers in Pennsylvania. The event also hosts a large gathering of state legislators and policymakers. Through planning this annual event, listening to youth and adults with disabilities and their families and caregivers, and researching public policy issues, Lissa strongly believes that disability issues must be a priority for the state legislature. Lissa has a wealth of experience about disability issues that will help to ensure that Pennsylvanians with disabilities have access to the home and community supports that they need to lead healthy, high quality, and independent lives.
Lissa’s priorities include:
Investing in education to ensure a Free and Appropriate Education (FAPE)
It is widely agreed upon by all stakeholders that early identification and service provision can lead to long-term cost savings. This means we must ensure our youngest children have access to programs like quality child care and pre-k with professionals who have knowledge of child development and can provide developmental assessments and make appropriate referrals. We must also do more to ensure that families who are at-risk receive developmental screenings through programs like evidence-based home visiting and ensuring access to healthcare and physicians of choice.
In our school districts, we need to ensure that all schools have resources to make appropriate evaluations and support students in their least restrictive environment. We need to acknowledge the significant costs behind support services, but also the long-term benefits (including the return on investment) to ensuring that students are included with their peers both during and beyond the school day. Further, we need to ensure that transition plans support students needs for continuing education, employment, independent living, and healthcare.
The Employment First movement, led by young adults over the last several years, has made important progress in ensuring that we have high expectations for youth with disabilities and that supports are available for youth and their families to provide competitive integrated jobs. Our Commonwealth should continue to work with employers to integrate individuals with disabilities and ensure that transportation is available to job sites. We need to build on this effort, ensuring that customized job coaching is available, and employers’ screening and hiring processes are inclusive to individuals with a range of abilities. We need to ensure that data around employment outcomes is collected and made available so that we can respond to the demonstrated policy needs. Furthermore, we need to quickly advance legislation that addresses eligibility for Medical Assistance for Workers with Disabilities (MAWD) which would allow individuals with disabilities to earn an income and still receive healthcare services that are not otherwise covered by private insurance or available for purchase.
Home and Community Based Supports
Medicaid Waiver Services – We need to address the waitlist for services for youth with disabilities transitioning from the K-12 education system who need employment, community participation supports, and/or supported living services. We need to also address the issue of adults with intellectual disabilities and autism who are living with aging caregivers. The legislature should require the Office of Developmental Programs to develop a multi-year plan to address this waiting list crisis for the more than 12,000 Pennsylvania families waiting for these desperately needed services. Part of such a plan should consider whether eligibility based on diagnosis or a broader waiver, such as has been implemented effectively in other states, would benefit both long-term costs and more efficiently deliver services to individuals with disabilities. We need to ensure that the services provided are based on the needs of the individual and their family, not the funding levels available. To do this, we must also address the crisis in staffing of waiver-supported services.
Staffing Supports – Just as in many other caregiving professions, there are great needs to ensure that this work is seen as a profession whose knowledge and skills have value. Especially as a result of COVID19, Direct Service Providers or DSPs should be recognized as the essential healthcare professionals that they are. PPE must be provided by employers for both employees and people with disabilities, and the state who sets rates for services must acknowledge these costs in its calculations. We need to authorize sustainable, recurring funding to ease the crisis in recruiting and retaining these professionals. One solution would be to promote this field as part of secondary Career and Technical Education (CTE) programs, apprenticeships, and career pathways to demonstrate the ability to advance in knowledge and credentials. We must systematically ensure that caregiving professions have pay and benefits that their expertise demands and increase retention of skilled individuals.
Paid Family Leave
Paid family leave must be a priority so that family members can care for their loved ones with disabilities and chronic medical issues without risking the jobs or their incomes to do so. AARP research shows there are 1.6 million family caregivers across Pennsylvania who provide 1.54 billion hours of unpaid assistance annually with a staggering value of $19.2 billion. Unpaid family caregivers have become America’s safety net. This too often comes at the expense of their own economic self-sufficiency, making even more individuals reliant on public benefits.
We need to ensure that healthcare access is available to all Pennsylvanians and individuals with disabilities or mental health concerns are often those who suffer the most when healthcare access is limited. In addition to medical coverage, we need to ensure that dental coverage is provided and that prescription medication coverage is affordable. We must also ensure access either through expanding locations or expanding telehealth options so that individuals with disabilities receive needed services and screenings in secure places that protect their privacy and safety.
While these services are important not just for individuals with disabilities, ensuring access to mental health care when needed is critical. Pennsylvania should look for ways that Medicaid can cover more individuals with a mental health diagnosis. Furthermore, both in response to COVID19 and in support of expanding access after a pandemic, we need to expand telehealth options for treatment of mental health diagnoses. We also need more specialists in mental health who can provide treatment to individuals with co-morbidities.