The Arc Massachusetts is continuing to seek passage of S. 1169, which creates a system of licensure for dental therapists. Massachusetts has a severe shortage of dentists who serve people with I/DD, and even fewer accept Medicaid. The purpose of the bill is to address this shortage of dental services for underserved populations, including those with I/DD. The bill requires that the curriculum for dental therapists include training on working with patients with I/DD. Maura Sullivan, Director of Government Affairs for the chapter testified before the Massachusetts General Court’s Joint Committee on Public Health. She discussed her challenges finding quality dental care for her son, Neil and Tyler, who have autism and mitochondrial disease. Their dentist ignored tooth decay until it was severe enough to require hospitalization and anesthesia because he was unable to treat them without it. She stated, “They deserve better care, more effort and I needed more communication and oral hygiene support strategies.”
Jill Smith, grant officer for The Arc Indiana, and Kelsey Cowley, President of Self-Advocates of Indiana, testified before an interim study committee of the Indiana General Assembly in support of supported decision making as an alternative to guardianship. Cowley stated: “An important part of self-advocacy is choice. We believe all people should have the choice to choose where, how and with whom they live their lives.” The committee recommended no action be taken until data from a pilot project in Wayne County is available.
Maura Sullivan, Director of Governmental Affairs for The Arc Massachusetts, recently testified at a hearing before the Executive Office of Health and Human Services on a proposed 2.72% increase in Community-Based Day Support Services rates. While The Arc Massachusetts is grateful for the increase, it is not sufficient to fulfill the requirements of the Americans with Disabilities Act or the Workforce Innovation and Opportunity Act because it does not allow for the meaningful integration of beneficiaries in the community. For example, Sullivan’s son Neil would likely only be out in the community for two hours per week due to her family’s inability to afford a higher staffing ratio.
Maura Sullivan, Director of Government Affairs for The Arc Massachusetts, testified in favor of Nicky’s Law (S.64/H.80) at a hearing of the General Court’s Joint Committee on Children, Families and Persons with Disabilities. The bill creates a registry of individuals against whom there is a substantiated finding of abuse or neglect of a person with I/DD by the Massachusetts Disabled Persons Protection Commission and requires provider agencies to check the registry before hiring a new employee. During her testimony, she stated: “As I sit here today, I think about my oldest son, Neil, who is making a transition next week into 24/7 services, where I will not be able to supervise who is with him day to day and every night. I just don’t have words strong enough to describe the importance of keeping my non-verbal, loving and vulnerable son and all of our sons and daughters safe. We must pass this overdue legislation now and implement it immediately.”
The Arc New Jersey supported and Governor Chris Christie signed A3386/S2711. The bill provides for more sharing of information regarding abuse and neglect between the Department of Human Services (DHS) and the Department of Children and Families (DCF). Additionally, it mandates that DCF conduct a child abuse registry check on every individual seeking employment at DCF, in facilities or programs licensed, contracted, regulated, or funded by DCF or DHS, or seeking to provide community-based services to individuals with developmental disabilities.
Meg Cooch, Executive Director of The Arc Illinois, and Kimberly Johnson-Evans, mom and Ligas Family Advocate, testified at a House Human Services Appropriations hearing on the FY18 Department of Human Services budget. They stressed the need to rebalance funding to focus on home and community-based services, the need for a wage increase for DSPs, and the funding of grant programs including Life Span, The Autism Program, and Best Buddies.
The Arc New Jersey has been vigorously advocating for a DSP wage increase. Executive Director Tom Baffuto testified before the Senate Budget Committee on the issue. He explained that low wages create a barrier to recruitment and retention and that “Although the proposed budget recognizes the need for increased service dollars, those dollars do not help the system if we don’t have the necessary staff to deliver the services.” Additionally, advocates from The Arc New Jersey have been meeting with members of the Assembly Budget Committee.
Leo Sarkissian, Executive Director of The Arc Massachusetts, testified before the Joint Committee on Ways and Means in favor of Governor Charlie Baker’s Proposed adjustment in Turning 22 formula. The Turning 22 program addresses the transportation, day/employment, and residential needs of individuals with I/DD who turn 22 and exit the school system. The formula adjustment is necessary because the number of graduates has increased from nearly 500 in the 1990s to nearly 1000. During his testimony, Sarkissian said: “It acknowledges that if funding is not approved, a high percentage of the graduating students will end up in a less desirable situation, either at home or in the MassHealth day habilitation program where employment will not be an option…”
Gary Tonks, Executive Director of The Arc Ohio, testified before the Ohio House Finance Subcommittee on Health and Human Services regarding the proposed Department of Developmental Disabilities Budget in HB 49. He commended the legislature for its work in increasing access to home and community based services in the past and asked that they continue by funding the 1300 new waiver slots requested by Governor John Kasich. Additionally, he called for an increase in DSP wages to address turnover of more than 50% experienced by independent providers. Tonks stated: “While our staff are dedicated and salt of the earth people, they too must keep the lights on in their own homes and feed their own families.”
The Arc Minnesota testified in favor of SF 807 and HF 1182. These bills reduce the income-based parental fees for participation in TEFRA (a medical assistance program for children with disabilities) by 50%. Parents testifying at the hearing discussed how the fees were depleting their savings, driving them into debt, and in some cases forcing them out of the program. Steve Larson, Senior Policy Director at The Arc Minnesota, stated in his testimony: “It’s unconscionable that children in our state are not receiving the health care and therapies that they need because of these parental fees.” The Star Tribune covered the hearing.