Jill Escher has written an insightful opinion piece about the 2014 Home and Community-Based Services (HCBS) rule. The rule restricts funding for people with disabilities to settings that meet the federal criteria for community integration. While the HCBS rule purports to protect the rights of people with disabilities to inclusive community living, Escher says that its primary goal is “to put the brakes on the creation of new residences and programs that cater specifically to adults with autism and other intellectual and developmental disabilities.”
“The Federal Government’s Quiet War Against Adults with Autism”, from the San Francisco Bay Area Autism Society Blog, 4/19/16, applies not only to adults with autism but to others with intellectual and developmental disabilities. Many of these adults need intensive supports, up to and including 24/7 care and supervision. Congregate care, providing services to people with disabilities in group settings, is one of many practical solutions to the need for long term care. It allows for the sharing of resources and lessening of feelings of isolation. It should not be ruled out as an option, although that appears to be the intent of many advocacy organizations.
In my opinion, there is also a quiet war on families who are offered no other alternative but to keep their adult child with DD at home with services that may not be adequate to provide the family with the relief they need and a good quality of life for their disabled family member for the long term.
According to the article:
“As our society grapples with the dramatic surge of young adults disabled by autism aging out of school and into the vastly less supported real world, one would think every effort was being undertaken to expand programs and housing to address their serious and lifelong support needs.
“But as it turns out, precisely the opposite appears to be happening. And it stems from a quite intentional new federal policy. Even though the number-one concern of autism families is the availability of long-term care for their disabled adult children, few people seem to know about seismic shifts in the federal approach to funding that are poised to sharply restrict options.”
With HCBS expenditures skyrocketing,
“Former CMS staffer Nancy Thaler, one of the architects of the new regulations, has explained the strategy quite bluntly (see this presentation for example...) saying that to achieve financial sustainability in this era of ‘demographic global warming,’ [referring to the ever increasing medical and care needs of the baby boomer generation] she envisions a system emphasizing supports for the families, and creating a system of adult foster care exempt from the typical and costly employment and tax laws, instead of out-of-home placements such as group homes or disability-supportive communities. Close relationships, she observes, are cheaper than 24-hour paid supports, and will ‘nudge the system toward sustainability.’”
The rule has been extended by further guidance from the Centers for Medicare and Medicaid Services (CMS) on settings that are presumed to possess “institutional qualities”,
“…wherein CMS retains what appears to be unbridled discretion to deny services funding. Also, in an unusual scorched-earth tactic to contain expenditures, the rules empower community snitches (in reality, those appear to be primarily federally funded advocacy groups) to inform CMS of programs or housing around the country they consider too congregate or disability-specific in nature.”
Disability Discrimination embedded in Law:
“One of the most troubling aspects of the new CMS rules [is] its necessary tool of overt disability discrimination. In an unprecedented move, the government is defining where a minority (here, people with developmental disabilities) can live before they can get needed social services, and promoting the idea of maximum quotas of units available to people with developmental disabilities, even in private residences. How would a senior citizen feel if told he could not receive public assistance if the government felt he lived with too many other elderly people? Should we shut off low-income housing vouchers to African Americans if more than 25% of a property is rented to people of color? Are people with Alzheimer's being told they cannot live with ‘too many’ other people with the condition? On top of the bureaucratic shenanigans, we are also talking about rank discrimination.”
Some reason for hope:
“There is some good news here: states retain a good amount of latitude in how they will implement the new regs. Some states will be more accepting of congregate solutions than others. It's my hope, and the hope of countless other autism families and advocates, that California allow the broadest possible range of choices for its autistic and developmentally disabled residents. … I encourage autism families to become familiar with the issues and to fight not only for their children's right to choose, but for an overall system guided by both efficiency and realism. “
Read the entire article here, and pass it on.
More information from the SFAutism Website:
May 20, 2016: Forum on HCBS in California (livestreamed)
Autism Society San Francisco Bay Area (SFASA) will be sponsoring a Forum on HCBS Rules in California. This event will feature officials and service providers speaking about the current status of federal funding for adults with autism in our state, and to maximize public access, it will be livestreamed for free (seating at the event is limited). The main purpose is to provide clarity about the rules as they apply in California so that families, programs and nonprofits serving the developmentally disabled can take steps to expand autism-friendly community-based offerings without undue fear of running afoul of federal guidelines when they go into effect in a few years.
Details about the event will be posted in April at the SFASA homepage
HCBS in California: Myths v Facts
The Coalition for Community Choice
The Atlantic: Who Decides Where Adults with Autism Live?
Website for information on HCBS policies and state transition plans