Wednesday, October 22, 2014

Unintended Consequences of Closing Sheltered Workshops

Parents have their say on closing sheltered workshops for their adult children:

Michigan 2014 Medicaid Waiver Conference Update

The Michigan Department of Community Health & The Michigan Association of CMH Boards Present: 

ANNUAL HOME AND COMMUNITY BASED WAIVER CONFERENCE on November 18 & 19, 2014 at the Kellogg Hotel & Conference Center - 55 South Harrison Road, East Lansing 48823.

We have three easy ways to register: 1. Online here; 2. Fax (517) 374-1053 or 3. Mail at MACMHB 426 S. Walnut, Lansing, MI 48933

Topics Covered: Michigan Medicaid Waivers including the Children’s Waiver Program (CWP) and the Habilitation Supports Waiver (HSW). Also, training in ASD (Autism Spectrum Disorder) and implementation of the Medicaid/MIChild Autism Benefit.

The regular fee for this Conference is $140 but it is only $20 for individuals receiving waiver services and their family members.

Continuing Education Credits available for Licensed Social Workers.

Overnight Accommodations/Directions:   The Kellogg Hotel & Conference Center is located in East Lansing adjacent to Michigan State University.  Our special guestroom rate is $75+ fees and taxes per night based on availability.   For specific directions or to reserve a room, please call 517/432-4000 and mention that you are attending the C-Waiver Conference.

Conference Brochure & Registration Materials:  Conference details and registration will be available on our website, or if you have any questions, please call (517) 374-6848.

MACMHB Contact info:

Anne Wilson, Training & Meeting Planner
Michigan Association of Community Mental Health Boards
426 S. Walnut Street, Lansing, MI  48933
(517) 374-6848 phone
(517) 374-1053 fax

Tuesday, October 21, 2014

Bringing Home the Bacon

Is there such a thing as a multi-Billion dollar NONprofit? Yes, there is, and one of them is The ARC, the country's largest advocacy organization for people with developmental disabilities. 

An article in Fusion, a newsletter from the national ARC for September 29, 2014, covers a recent report from the National Center on Charitable Statistics of the Urban Institute. Based on a year's worth of data compiled from IRS 990 forms (the forms that most nonprofit organizations file annually with the IRS),  The ARC and its chapters throughout the United States have brought in $4.02 Billion in Gross Receipts, "…including $3.83 Billion in Total Revenue, $2.76 Billion in Program Service Revenue, $989 Million in Contributions & Grants (includes Government Grants) and $20 Million in Investment Income."

"Of the Total Contributions, Gifts and Grants, $145 Million is from individuals, foundations and corporations while $847 Million is from government…"

That's a lot of money! Of The ARC's total revenues of $3.83 Billion, $847 Million or 22% came from government, and  $145 Million or 3.8% from individual donations.

One can learn a lot about an organization from its IRS 990 forms, including its revenues, expenditures, and how much it pays its highest paid employees. Guidestar is a good place to start looking for information on nonprofit organizations. Registration is free. Here is Guidestar's Frequently Asked Questions about form 990.

Read the full article on The ARC's finances here.

Friday, October 17, 2014

The Revolving Door between Advocacy Organizations and Government

I found this in an email newsletter from ACCSES, a national disability provider organization. 

Careful! You might get dizzy. Ms. Barkoff has gone from staff attorney at the Bazelon Center for Mental Health Law, to the US Department of Justice, with forays into the Centers for Medicare and Medicaid Services and the Department of Labor, and back again to the Bazelon Center:

Alison Barkoff Returns to Bazelon as Advocacy Director

Ms. Barkoff was a staff attorney with the Bazelon Center [for Mental Health Law] from 2005 to 2010, before joining the U.S. Department of Justice (DOJ), where she served for four years as Special Counsel for Olmstead Enforcement in the Civil Rights Division. As Director of Advocacy, Ms. Barkoff will help lead the Bazelon Center's policy and litigation work, as well as work on organizational activities such as fundraising. While at the DOJ, Ms. Barkoff led the Civil Right Division's efforts to enforce the rights of individuals with disabilities to live, work, and receive services in the community. Under her leadership, the Division issued its first guidance based on the U.S. Supreme Court's landmark Olmstead disability-rights ruling and was actively involved in Olmstead litigation across the country, including several cases culminating in statewide system reform settlement agreements. She also worked with Centers for Medicare and Medicaid Services [CMS, the federal agency that regulates Medicare and Medicaid] on finalizing rules governing Medicaid-funded community-based services and with the Department of Labor on implementation of its new home care rule in Medicaid-funded disability service systems.

Wednesday, October 15, 2014

New Jersey: Autistic man brought "home" from PA; ends up in jail with no other options

This is from the VOR Weekly News Update for 10/10/14:

Tyler Loftus, 23, has been sitting in New Jersey’s Hunterdon County Jail since September 18. “Every day he calls and says, ‘Mom, come get me, I don’t want to stay here,'” his mother, Rita O’Grady, told me.

Diagnosed with autism and intellectual disability, Tyler has the cognitive capacity of a 5-year-old. He can’t understand why he’s not allowed to leave.

“I never consented to this placement,” O’Grady said. “I specifically withdrew consent, because I knew what would happen. But the Arc [the agency that operated the group home] moved him anyway.”

And there are facilities that specialize in the treatment of individuals with developmental delay and dangerous behaviors: the Woods School in Pennsylvania, for instance, where Tyler lived from the ages of 15 to 21. Closer to home there are state-run developmental centers, such as the one in Hunterdon, where Tyler has previously been admitted.

But these are no longer options. Governor Chris Christie’s Return Home New Jersey program has put a moratorium on all out-of-state placements and “Christie is closing [developmental centers],” O’Grady told me. “And he’s put a stop order on all new admissions. Ideally, Tyler would be at Hunterdon while a permanent placement is found, but they can’t take him.”

The problem, O’Grady explained, is that the community-based supports that Christie promised have not yet materialized...

Read the full article here : "No End in Sight for Autistic Man Jailed in New Jersey" by Amy Lutz, 10/3/14.

Here is an updated article about the case: "Christie plan to return disabled to N.J. leads one man to hospitals, jail" by Susan Livio, 10/10/14 at .

VOR is a national organization that advocates for the right of individuals with intellectual and developmental disabilities and their families to choose from a full array of high quality residential and other support options including own home, community-based, and large settings such as Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IDD). See also VOR Weekly News Updates and Olmstead Resources.

Wednesday, October 8, 2014

...and you thought you were having a bad year!

When more costs less: more RN's in nursing facilities equals better and less costly outcomes for patients

Some of the most severely developmentally disabled people have medical needs that go beyond what most community settings and group homes can provide and may only be adequately met in Intermediate Care Facilities for people with intellectual and developmental disabilities. But what is the cost of not meeting those needs through the availability of competent nursing services?

Here is a clue from an article in the New York Times, "Where are the Nurses?" by Paula Span, 8/13/14. It looks at the effects of too few registered nurses in nursing homes:

"The 1987 federal law intended to reform the country’s nursing homes required a registered nurse on-site only eight hours a day, regardless of the size of the facility. Supporters at the time understood that in a building full of sick and disabled elders, health crises could occur at any hour. But getting the legislation passed required substantial compromises, including in regulations allowing reduced nurse staffing.

"'It’s something advocates have wanted to return to ever since,' said Robyn Grant, director of public policy and advocacy for the National Consumer Voice for Quality Long-Term Care. 'I think most people will be both shocked and appalled that there’s not an R.N. on duty around the clock.'"

Representative Jan Schakowsky, Democrat of Illinois, wants to fix this through proposed legislation, HB 5373:

"Adding registered nurses will hardly solve all the quality problems at nursing homes, which need more staff of other varieties, too. But it’s important unfinished business.

"'Otherwise, we probably should refer to these facilities as something besides nursing homes: 'pre-hospitalization holding facilities,' perhaps, or 'well-intended residences for the incurably underattended to.' You can probably come up with a few even-less-flattering names yourselves.'"

Studies cited in the article support the idea that providing adequate nursing care in nursing facilities will save money in the long term: 

"Studies have repeatedly pointed to the importance of registered nurses. With higher registered-nurse staffing, patients have fewer pressure ulcers (aka bedsores) and urinary tract infections and catheterizations. They stay out of hospitals longer. Their homes get fewer serious deficiencies from state inspectors. Their care improves, but it costs less."

Perhaps we could learn something from this for people with DD.