by Jane McClure
Affordable and accessible housing, reforms for working people with disabilities, and dealing with the direct care crisis are among issues the Minnesota Council on Disability (MCD) will champion during the 2023 legislative session.
Council members, staff and self-advocates presented the 2023 legislative agenda, outlined priorities and discussed issues with state lawmakers during the annual legislative forum December 16. The forum was held virtually, with hundreds attending. A recording will be posted on the state council website in January.
More than 30 state lawmakers indicated they would attend the forum. But one key change this year was that several self-advocates and state council members took a lead in explaining issues, rather than simply listening to state lawmakers.
Many of the stories were moving. A man outlined how his parents help with personal care needs and his current living situation, and he wonders what he will do when they are gone. A parent described trying to save her child with a rare disease and hitting obstacle after obstacle with medical care and insurance.
A young man who uses a wheelchair told of finding out how truly limited his housing options are, especially when a lack of roll-in showers is seen. The high cost of hearing aids and the difficulty in paying for them were explained. Seeking and retaining public and private employment, while balancing healthcare needs and strict income limits were hurdles several people explained in detail.
Trevor Turner, director of public policy for the state council, outlined the three pillars of priorities that will be focused upon when state lawmakers convene January 3. Each pillar is built on related legislative initiatives.
One pillar is to increase disability representation in state government. Tied to that are efforts to work toward more state employment and retention of employees with disabilities.
As it did in 2022, the council is also again seeking support for capacity-building as its budget and employee ranks have remained relatively flat despite growing demands for service. The Minnesota Council on Disability will request a capacity building budget increase of $750,000 in FY2024 and then $1,247,000 each fiscal year afterwards. This is on top of the current budget of $1,038,000, resulting in a total yearly budget of $2,285,000.
A state government function the council will be supporting in 2023 is ongoing funding for the recently established Rare Disease Advisory Council. The council is supposed to sunset after fiscal year 2023; advocates would like its work to continue.
The second pillar centers on improving the lives of Minnesotans with disabilities, with one focus being increasing personal care attendant (PCA) pay and addressing the dire home care worker shortage. Related to that is to change regulations on PCA driving, so that clients can be driven to needed places and staff can get paid.
Another need is accessible and affordable housing. A fourth is improved insurance access for people with rare diseases.
A big change sought is a Minnesota Human Rights Act amendment to include “episodic disabilities.” Episodic disabilities are life-long conditions, such as diabetes, cancer and multiple sclerosis for which there is no cure. People who live with these disabilities know that some days are better than others. People living with episodic disabilities experience periods of fluctuating good or poor health and rely on proper care, monitoring and treatment. The need for this change came up due to a legal case, where the federal Americans with Disabilities Act (ADA) provided support while state law didn’t.
But the second pillar change that has drawn the most focus in recent years is reform of the asset limit for Medical Assistance for Employed People with Disabilities (MA-EPD). Many Minnesotans with disabilities rely on the program for access to health care. Several speakers at the forum said the program is a lifeline and a chance to work and contribute to the community.
But strict income and asset limits perpetuate poverty, as those in the program have to either spend down the few assets they have or pay high premiums to access Medicaid. People cannot save up to buy housing or a car, and struggle to live independently under such strict rules.
Disability partner support is the state council’s third pillar, with a diverse array of issues to be supported with other entities. One is the Minnesota Inclusive Education Consortium’s effort to open up more college programs to students with intellectual disabilities.
Longstanding efforts to increase state parks’ accessibility will continue with the Minnesota Department of Natural Resources. Another longtime MCD priority is that of transportation improvements, including autonomous vehicles.
The Minnesota Commission of the Deaf, DeafBlind, & Hard of Hearing will get council help with its efforts to make hearing aids more affordable. A Minnesota Department of Administration study of disabled-owned businesses is another support item. So is support for the Minnesota Consortium for Citizens with Disabilities legislative agenda.
Turner said one focus will be seeking additional resources, in light of the state’s record budget surplus, saying there needs to be an effort to get the supports and services Minnesotans with disabilities need.
See the state council’s full list of priorities and the video at https://www.disability.state.mn.us/