Current Community Living Issues
Community and Family Support
Unequal Access to Community and Family Supports (Act 378)
Act 378 of 1989 called for a system of community and family supports to be available for families of children and adults with disabilities in their own homes based on their individual needs in order to avoid out-of-home placement. The Act directed the Louisiana Developmental Disabilities Council (the Council) to develop a plan for this system based on guiding principles included in the law and directed the state to adhere to these principles in program planning, development, funding, and implementation. Act 378 called for the Council to monitor implementation of the Community and Family Support System Plan, which it continues to do today.
The Community and Family Support System has been extremely successful in keeping people with disabilities in their own homes and communities through the provision of cost-effective, individualized, and flexible supports; and consumer satisfaction has remained high for those who receive services. However, the shift from a centralized community support system to one administered by the ten human services districts/authorities or local governing entities, has resulted in some unintended consequences. What Act 378 created as a statewide program with equal access, has, in some respects, become ten programs providing varying degrees of access depending on where one lives in the state.
Recognizing this inequity, the Council formed a Community and Family Support System Task Force to develop recommendations for Governor John Bel Edwards, LA Department of Health Secretary Dr. Rebekah Gee, legislators, and others to address funding and other issues preventing the system from meeting the needs of Louisiana’s citizens with disabilities and their families.
Read the Council’s Fact Sheet: Equitably Fund Districts/Authorities: Provide Equal Access to Services
New Home and Community Based Services Rule
The Centers for Medicare and Medicaid Services (CMS) issued a new Federal rule to ensure individuals receiving Home and Community-Based Services have full access to the benefits of community living and are offered services in the most integrated settings. As part of the Affordable Care Act, the rule is designed to improve the quality of services for individuals receiving Home and Community-Based Services (HCBS).
The rule defines and describes the requirements for where HCBS can be delivered (both where people live and where they receive services during the day) and adds new person-centered planning requirements. Louisiana must evaluate where services are currently being delivered (settings) in its waivers and Medicaid State plan programs. If there are settings that do not meet the new home and community-based settings requirements, the Department of Health and Hospitals will have to develop a plan – with input from the public – to bring their programs into compliance. The state will have up to five years to transition any setting not in compliance with the new rule.
The Office for Citizens with Developmental Disabilities (OCDD) has developed a plan to evaluate HCBS settings within the New Opportunities Waiver, Children’s Choice Waiver, Supports Waiver, and Residential Options Waiver, to assure that the requirements of the rule are being met and to allow the public an opportunity to provide input on the transition plan. The plan can be reviewed and comments can be submitted here. The Office of Aging and Adult Services (OAAS) and the Office of Behavioral Health (OBH) have also developed plans to ensure its HCBS are delivered in places that meet the new requirements and to solicit public input. Review the OAAS plan and submit comments here. Review the OBH plan and submit comments here.
Guidance on the HCBS Settings Rule in regard to non-residential settings from the Centers for Medicare and Medicaid Services (CMS)
The Ever Growing Waiting List for Waiver Services
There are over 14,400 people with developmental disabilities who wait over twelve years for home and community based waiver services. Advocating for additional waiver slots has been an ongoing initiative for the Council since the waiver's inception over twenty years ago and will continue until the waiting list is eliminated. Learn more and join the movement to End the Wait!
Institutionalization vs. Home and Community-Based Services
Between 2005 and 2012 Louisiana decreased the number of large publicly operated developmental centers (ICFs/DD) from nine to one, with Pinecrest the only remaining center open. The Council continues to advocate for the downsizing and eventual closure of this center as we also advocate for the capacity of the community provider system to increase to serve individuals with challenging medical and behavioral needs.
Unfortunately there has not been similar progress in the downsizing and closure of private, residential facilities (large and small ICFs/DD). In fact, Louisiana leads the nation in the number of people per capita in all ICFs/DD. There are people living in 24 hour facilities who do not need 24 hour supports. Resources being spent on residential facilities could be used to support these individuals with waiver services and the cost savings could serve others on the waiting list. It is long overdue for the state to begin moving these residents into their own homes in the community where they will have more opportunities to gain greater independence, develop relationships, and exercise self-determination in their lives.
- The average cost to serve an individual in Pinecrest: $259,463
- The average cost to serve an individual in a small private ICF/DD: $57,995 - $72,690
- The average cost to serve an individual through a new NOW slot is: $51,195
LA continues to rely more heavily on institutions for people with developmental disabilities than other states
Constitutional Amendment #1
Constitutional Amendment #1 was authorized by the Louisiana Legislature through Act 439 of 2013 and was approved by voters on November 4, 2014. This amendment creates the Louisiana Medical Assistance Trust Fund in Louisiana’s Constitution. The fee that is collected by nursing homes, Intermediate Care Facilities for People with Developmental Disabilities (ICFs/DD), and pharmacies will be deposited into this fund to be used as state match for federal Medicaid dollars. The amendment also sets a base rate for these same providers in the Constitution and makes it very difficult to reduce their rates in the event of a budget shortfall.
Rates for home and community based services ARE NOT constitutionally protected. In the event of a budget shortfall, the portion of the budget available for legislators to cut will now be smaller, placing home and community based services and other services for vulnerable populations, like hospice and mental health services, at greater risk of cuts.