Wednesday, October 12, 2016

DD News updates for families and people with DD

Here are a few articles that are worth reading: 

The Autism Society of the San Francisco Bay Area Blog is always worth reading, especially when it comes to implementation of the federal Home and Community-Based Settings (HCBS) rule:

9/21/2016 by Jill Escher

Jill Escher is an autism philanthropist, real estate investor, former lawyer, and mother of two children with nonverbal autism. She is also the President of the Board of Directors of the Autism Society of the San Francisco Bay Area. 

The Centers for Medicare and Medicaid Services (CMS) is the federal agency that regulates Medicare and Medicaid. CMS issued the controversial Home and Community-Based Settings (HCBS) rule in 2014 that limits HCBS funding for people with disabilities to only those whose residences and services are considered by CMS as sufficiently integrated in the broader community. Here are some excerpts from the SF Autism Blog on the effects of the HCBS rule on people with autism and Intellectual and Developmental Disabilities living in private settings:


“Residences controlled by Medicaid service providers like group homes have always needed to pass various CMS tests. But now the agency is undertaking a vast expanse of regulatory reach into private residences owned or leased by the disabled persons, such as homes, apartments, condos, townhomes, mobile homes, houseboats, yurts, farms, ranches, tiny homes… every private place an autistic/DD adult might reside of their own volition. Based on ostensible new CMS rules, after property-based investigations, private homes deemed to be 'noncompliant' will be ineligible for residents to receive HCBS.

"In a nutshell, noncompliance means CMS or the state Medicaid authority has found a private residence has 'the effect of isolating' beneficiaries from the greater community and therefore is legally considered to have 'the qualities of an institution.' ... If the residence does not become “compliant” following an order from CMS or the state, current and future residents are ineligible for HCBS benefits. It's functionally equivalent to a licensing scheme for private residences.

“…if CMS had been upfront and said, “Here’s our new autism/DD private residence licensing requirement,” the ensuing uproar would have crushed the proposal, as CMS lacks authority to regulate private residences. But when you create policy by stealth, smoke and mirrors, closed-door-crafted guidances, and a heap of vague lingo and euphemism, maybe no one will really notice."

read more here….

This blog post is Part 2 of “The Federal Government’s Quiet War against Adults with Autism” 

Here is Part 1 of “The Federal Government’s Quiet War against Adults with Autism


Also from the San Francisco Bay Area Autism Society Blog is a post by Lisa Graziano, the parent of a son with Prader Willi Syndrome or PWS. She fears that that the federal HCBS rule will restrict disability-specific housing that her son and others like him desperately need:


by Lisa Graziano

“…Our loved ones with PWS have an insatiable drive to eat no matter how much food they consume and require significant residential and vocational supports. If food is not strictly controlled and locked away, people with PWS will die from stomach rupture or from other food-related complications. Adults with PWS must live, work, and play in settings that are specifically designed to meet their unique health and welfare needs – namely that the refrigerator and food cupboards are locked at all times, trash cans are emptied and secured, there is no access to money or credit cards that could be used to purchase food items, there is continuous supervision to ensure they don’t ask or beg neighbors or otherwise engage their community for food, and they receive support to manage the often violent behavior outbursts common for the syndrome. Without appropriate restrictions, people with PWS will literally eat themselves to death and/or engage in trespasses in relentless attempts to find food.

“Any attempt to integrate people with disabilities in a one-size-fits-all cookie cutter approach, like the federal Medicaid agency CMS appears to be attempting, actually reduces choice and further isolates people with developmental disabilities.”


From the VOR Weekly Update for October 7, 2016 : 

The COFAR Blog - Guardianship Under Fire by the Same Groups that Oppose Congregate Care

By Dave Kassel, September 30, 2016

Guardianship of persons with developmental disabilities is under fire in Massachusetts and elsewhere, and families could see their advocacy rights eroded as a result. One prominent threat to guardianship appears to be embodied in a process called Supported Decision Making (SDM).

Under SDM, individual guardians are replaced by teams or “network supporters,” who enter into written agreements with disabled individuals to “help them make decisions” about their care, finances, living arrangements and other areas. The network supporters can include family members, friends, and corporate service providers, according to the Center for Public Representation, which is pushing for SDM in Massachusetts. 

There are some promising aspects to SDM, but a number of concerning aspects as well. To the extent that it can or does replace irresponsible or uncaring guardians with supportive teams, SDM would appear to have a potential to improve the lives of many people.

On the concerning side, SDM does not appear to be well designed for people with severe levels of disability.  Those people are most in need the protections of guardianship; yet, many SDM advocates paint guardianship with a broad, negative brush and don’t appear to acknowledge the value that family members, in particular, bring as guardians to the lives of their loved ones.

This issue of the VOR Weekly Update includes several articles about the failure of states to live up to their responsibilities to serve people with DD in New York, West Virginia, Connecticut, and Illinois. 

Learn more about VOR:

"VOR is the one organization that strives to keep the big picture in focus. Our goal is to help individuals with Intellectual and Developmental Disabilities (I/DD), their families, their guardians, and their caregivers. We try to see the big picture, that we are all in this together, and that we should be fighting together to improve services for everyone. We should make sure that more funds go to care for and provide support for individuals, and that they don't get diverted to agencies and organizations that profit from promoting ideologies that only serve part of the I/DD community. 

"VOR realizes that individuals need individualized services, and we support the full range of residential and employment options. We support guardianship and recognize it as both a right and a responsibility. We support integrated living for those who seek it, and we support congregate living for those who may not. We know that a home is defined by love and care and safety, not by the size or floor plan of the building. We know a community is not defined by how many non-disabled people are present, but by the sense of belonging one feels with those around them. We know that for some, competitive employment provides a sense of accomplishment, while for others, there are benefits far more important than the size of a paycheck that can be derived from performing meaningful work among one's peers..."

Check out the VOR Website

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