The Arc Connecticut is advocating for funding for its services in the face of a lapse in Medicaid funding that threatens the services they provide and the constituents they serve. Shannon Jacovino, Director of Advocacy for The Arc Connecticut, was quoted in an article in the Hartford Courant discussing the average cost of serving people with I/DD in Connecticut. Kate Haaland, a parent advocate with The Arc Connecticut and her son Chris create a video explaining how important Medicaid is for him. Chris states: “I can have an amazing life……just like you. But only if Medicaid exists.” The chapter also held a rally at the state capitol that drew 300 people.
The Ohio Department of Developmental Disabilities issued proposed changes to its Individual Options Waiver rules that include proposals supported by The Arc Ohio. These changes include an add-on rate for individuals with complex care needs, increasing the environmental accessibility adaptations limit, and establishing shared living as a replacement for adult foster care and adult family care. This results in equal funding for related and unrelated caregivers.
Governor John Kasich approved a budget for the Department of Developmental Disabilities that includes $65 million in new funding. Major victories for The Arc Ohio include:
- 750 additional waiver slots;
- Increasing waiver reimbursement rates for individuals with complex care needs;
- An increase in wages for DSPs; and
- Funds for nurses to train and assess DSPs in delegated health-related tasks.
The Arc New Jersey organized families to testify before the Assembly Human Services Committee in opposition to Public Partnerships, LLC (PPL) as the fiscal intermediary for self-directed services. This move is part of the state’s move from an Agency with Choice model to a Fiscal/Employer Agent model, which makes the individual receiving services or his/her representative the employer of the service provider. The families expressed frustration with the bureaucratic nature of PPL and the fact that they do not provide health insurance for employees. Chairwoman Valerie Huttle announced at the end of the hearing that she will write to Department of Human Services Commissioner Elizabeth Connolly to share the concerns expressed during the hearing.
The finalized budget for the State of Maryland contains many victories for The Arc Maryland including:
- A 3.5% waiver rate increase to cover the cost of compliance with the Minimum Wage Act of 2014;
- Funding for 789 individuals with I/DD aging out of the school system to receive employment and other day services;
- Waiver slots for the Crisis Resolution category, or the 101 individuals with the most urgent needs;
- Reducing the Family/Individual Support Capped Waiver and Community Support Capped Waiver Waiting lists by 400 each;
- The use of the Waiting List Equity Fund derived from the sale of state institutions and deinstitutionalizing to fund waivers for 36 individuals with priority given to those with the oldest caregivers;
- Community Services for 26 individuals with I/DD involved in the court system;
- $250,000 for inclusive higher education programs for students with I/DD;
- 100 new Autism Waiver slots; and
- A $3.7 million increase for pre-kindergarten education.
The Ohio House of Representatives has introduced a substitute to Governor John Kasich’s budget that includes many harmful changes to his proposed Medicaid budget including:
- No New Funding for Waivers;
- No Increase for ICF Rates;
- No Increase for Direct Support Wages;
- No Increase for Complex Care Add-On;
- No Increase to Rate for ICF Adults on Ventilators;
- No Increase for Families providing Shared Living;
- A prohibition on increasing the number of slots available under the Individual Options (IO) and Self Empowered Life Funding (SELF) Medicaid waivers;
- Prohibiting Medicaid rates from being increased for the purpose of encouraging providers to serve Medicaid recipients with complex care needs;
- Prohibiting the restructuring of Medicaid rates for the purpose of encouraging the shared living service setting; and
- Prohibits Medicaid rates from being increased for the purpose of increasing the wages of direct service staff.
The Arc Ohio is mobilizing their grassroots advocates to fight this harmful budget.
The Arc Pennsylvania lauds Governor Tom Wolf’s newly proposed budget as the best in a decade. Major improvements include:
- $26.2 million for a new waiver called the “Community Living waiver” with slots for 1,000 individuals with ID currently on the waiting list and 820 Person/Family Directed Support waivers for recent high school graduates;
- $195.9 million, a 14.7% increase, to provide home and community based services to more than 55,000 individuals and increase DSP wages;
- $4.9 million decrease for State Centers;
- $544,000 to transition 40 individuals out of state institutions and into the community as part of a litigation settlement;
- $25 million increase for special education; and
- $11.7 million for Preschool Early Intervention for 1,100 new children
In response to the budget, The Arc Pennsylvania’s Executive Director Maureen Cronin said: “Advocacy is frustrating work because we don’t always (well, almost never) see the impact right away, but times like this remind us that showing up makes a difference.”
The Arc Virginia’s advocacy efforts secured an additional 584 waiver slots in the state’s budget bill (HB 1500). This includes 494 waivers for individuals on the waiting list and 90 for individuals transitioning out the state-run training centers. While The Arc Virginia welcomes this increase, the chapter is concerned that the bill provides no assistance to more than 80% of the 2,906 individuals currently on the priority 1 wait list or the 8,217 individuals on the Priority 2 and 3 wait lists. Individuals on the priority 1 waiting list are those who: need services within one year of their request; require a high level of support; whose health and safety may be in jeopardy due to lack of a caregiver; or have immediate risk to their health and safety, that of their primary caregiver, or that of another person living in their home. The Arc Virginia has been sharing this infographic to help legislators understand the waiting list in the state’s newly re-designed system.
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.
The Arc Connecticut recently testified before the state legislature regarding revelations of excessive overtime costs at Southbury Training School, an institution for people with I/DD, encouraging the state to move away from this institutional model of care and to use the savings to provide more services to people with I/DD in the community. The Southbury Training School paid $12.3 million in overtime to its 615 staff members in the last fiscal year. One direct care worker with a base salary of $60,225 received total compensation of $237,886. The average cost per resident on the Southbury campus was $360,000, more than twice the cost per resident in the private sector, according to an analysis from the state of Connecticut. Learn more about the issue here.