Thursday, July 31, 2014

Adults with autism: "Going over the cliff" into adulthood with tragic results

JaLynn Prince from the Madison House Autism Foundation 

The phrase, "going over the cliff",  has become a standard description of what happens to far too many adults with autism who no longer qualify for educational services and are left with not much to do and nowhere to go. When the autism diagnosis includes intellectual disabilities, severe behavioral problems, and a need for constant care and supervision, family members are forced to adjust to an even more difficult situation than when their children were in school. Parents especially may feel a desperation that makes them wonder if this is a job they can ever retire from and what will happen when they can't do it anymore?

The Washington Post first reported a crime story on July 21, 2014, "Rockville, Md., couple charged with abusing twin 22-year-old autistic sons" by Dan Morse. Police came to the house with a search warrant on an unrelated matter and found the twins, locked in "a basement room with no furniture, no working lights and a single comforter on a bare tile floor."  The men's parents locked the twins into the room at night and had removed furniture because it was soiled. The room was locked from the outside and smelled of urine. This led to further investigation and charges of abuse and false imprisonment brought against the parents.

The crime report set off a more general discussion about the lack of services for autistic adults and the difficulty in caring for people with the most severe and complex forms of autism. The Washington Post published another article on 7/26/14, "Coping with adult children’s autism, parents may face ‘least bad’ decisions" by Dan Morse. The article included a story, not about abuse and neglect, but about another autistic young man whose parents appear to be exceptionally resourceful in figuring out how to keep him safe while living in the family home. Nevertheless, they have had to make considerable sacrifices to take care of him and still face situations that even they are not prepared for:

"...As [John's father] speaks, his 18-year-old son John starts to pace and moan in the kitchen. John typically won’t sit down for dinner until he and his parents are around the table, holding hands, his father saying the blessing. Mark walks toward the kitchen, past the locked front door, the locked door to the garage, the locked door to the basement. Those barriers, along with a tracking device John wears, the burglar alarm and the fence around the house, are designed to keep him from wandering off.

"But sometimes, even that isn’t enough. Three years ago, wearing green pajamas, John made his way to a Metro train platform four miles away just before a train came barreling into the station.

"For parents like the Bucknams, their children’s transition to adulthood is filled with gut-wrenching choices and challenges. The assistance connected with high school programs goes away. The best adult services often are at the end of long waiting lists. The pressures mount for parents to prepare for life after they’re gone…."

Later in the article a quote from Mr. Bucknam appears that is apparently the inspiration for the title of the article:

“'We can’t condone their choices,' says Mark Bucknam… 'But it’s possible that, in their minds, this was the least bad way to deal with this,' Bucknam says."

This set off a reaction from a number of disability advocacy groups condemning the paper for, in their view, offering an excuse for, rather than condemnation of, abusive treatment of people with disabilities by their parents or other caregivers. I don't see it that way, but more about that later.

Monday, July 28, 2014

U.S. House Bill proposed to help caregivers avoid an impoverished old age

From the New York Times, "Addressing Caregivers’ Loss of Retirement Income" by Paula Span, 7/25/2014:

"Earlier this month Representative Nita M. Lowey, Democrat of New York, introduced what she’s calling the Social Security Caregiver Credit Act, intended to increase retirement income for middle-class citizens who must reduce their work hours or leave the work force because of caregiving duties."

Passage of the bill is a long shot, but it offers one solution to the financial toll that caregivers pay to take care of a dependent family member. According to the article:

"A MetLife study in 2011, ...estimated that men who reduced work hours to provide care for parents received almost $38,000 less in Social Security benefits. If they stopped working, they gave up more than $144,000.

"The damage from cutting back on work was worse for women: they lost more than $64,000 in Social Security benefits. Leaving the work force to care for a parent cost them more than $131,000 in addition to the lost wages (and, sometimes, pension contributions) themselves."

Caregiver credits would apply to people who earn no more than the national average wage ($44,320 in 2012).

According to Chris Bigelow, Lowey's legislative director, "someone not working at all would get $22,000 recorded as his or her earnings that year; someone working part-time at an annual $33,000 salary gets an additional $5,500 credited. Caregivers could qualify for the credit for 60 months and wouldn’t have to use them consecutively. You could take care of your mother for a year, get a credit, return to work, then later get credit if you cared for your father."

A "dependent relative" includes adult children who are "chronically dependent" and need assistance with activities of daily living.

Tuesday, July 22, 2014

Community Choice Coalition Events and Updates

This is an announcement of events and updates from Desiree Kameka from Madison House Autism Foundation, Rockville, MD, and the Coalition for Community Choice:

Greetings Coalition for Community Choice,

I hope the summer is treating you well. Below, are a few important dates to be aware of in the upcoming weeks:

1) Many states have already gone through a round of public comments on their state transition plan [to comply with CMS rules on Home and Community Based Service settings]; keep checking the HCBS Advocacy website to be informed of your state deadlines and information. Thirteen states are expected to submit their waiver applications by September 2014. Transition plan deadlines in FL, NY, GA, and ND are coming up this month. Please feel free to contact me for assistance in preparing public comments.

2) The 2014 National HCBS Conference is scheduled for this September 15 -18, 2014 in Arlington, VA. I am attending and would like to connect with any CCC members who will also be there so we can strategically make contacts and garner as much information as possible. Email me if you are attending. You can view last year’s plenaries and materials on their website.

3) The Brookwood Community Networking Days Conference is coming up August 20-22. Check out this video of Michelle, a Brookwood citizen, describing why we need more Brookwoods in the world.

Thank you to Homes for Life, Safe Haven Farms, Casa de Amma, and Down Home Ranch for your recent contributions to the work of CCC. For those who missed it, here is a letter from Jerry Horton of Down Home Ranch offering an opportunity to support our collective mission of choice.


Desiree Kameka
National Coordinator, Community Choice Coalition
Madison House Autism Foundation


The Coalition for Community Choice (CCC) is a national grassroots collaboration of persons with disabilities, their families and friends, disability rights advocates, professionals, educators, and housing and services providers to advance the principle that community can be experienced in all residential settings. CCC was created to 1) promote and defend the rights of people with intellectual and developmental disabilities (I/DD) and autism to choose their residential settings from the broadest range of options; 2) educate federal and state governments on innovative Olmstead-compliant housing alternatives to “one-size fits all” approaches; and 3) preserve access to essential, publicly-funded services and supports in these settings.

Michigan's transition plan for HCBS settings is not due until March 2015. Check here for updates and more information.

Thursday, July 17, 2014

Michigan: Proposed criminal background checks for personal care providers

Following a state audit of the Medicaid-funded Home Help Services Program in Michigan, the Michigan Department of Community Health has proposed new policies for screening personal care providers. This will standardize criminal background checks of all providers of personal care services provided by the Michigan Medicaid State Plan, including the Home Help Program. 

The state audit, released in June 2014, found that of the approximately 70,000 individual providers of Home Help services, 3,786 had felony convictions prior to Jan. 2, 2013. "This included…572 convictions for violent crimes ranging from assault to homicide; 285 convictions for sex-related crimes; 1,148 convictions for financial crimes such as fraud, identity theft and embezzlement; and 2, 020 convictions for drug related offenses."

The proposed criminal background check policy will apply to all providers of Home Help Services, including parents and other family members who provide these services. According to Brian Barrie at the state Medical Services Administration, screenings will be done as part of the provider enrollment process.  All providers will be placed in the CHAMPS system [CHAMPS is the state computerized Medicaid Processing System]  and the screenings will be done then.  Any additional cost will be absorbed by MDCH.

Comments on the proposed policy are due by July 25, 2014.

Mail comments to:

Brian Barrie
Bureau of Medicaid Policy and Health System Innovation
Medical Services Administration
P.O. Box 30479
Lansing, Michigan 48909-7979

Telephone Number: (517) 335 - 5131
Fax Number: (517) 241-7816
E-mail Address:

The effective date of the policy is September 1, 2014.

The proposed criminal background checks are required by the Affordable Care Act. Section 1128(a) of 42 U.S.C.1320a-7 (the Social Security Act) prohibits individuals or entities from participating in programs funded under the Act if they have been convicted of any of the Mandatory Exclusion offenses outlined in the policy.

Here are excerpts from the proposed policy:

Mandatory Exclusions: Providers (any individual or entity) MUST be screened for and, as required by the State of Michigan, MUST disclose the following excludable convictions. Any applicant or provider found to meet one of these four categories is prohibited from participating as a service provider for Medicaid or the Home Help program. The mandatory exclusion categories are:

  1. Any criminal convictions related to the delivery of an item or service under Medicare (Title XVIII), Medicaid (Title XIX) or other state health care programs (e.g., Children's Special Health Care Services, Healthy Kids), (Title V, Title XX, and Title XXI)
  2. Any criminal convictions under federal or state law, relating to neglect or abuse of patients in connection with the delivery of a health care item or service.
  3. Felony convictions occurring after August 21, 1996, relating to an offense, under federal or state law, in connection with the delivery of health care items or services or with respect to any act or omission in a health care program (other than those included in number 1 above) operated by or financed in whole or in part by any federal, state, or local government agency, of a criminal offense consisting of a felony relating to fraud, theft, embezzlement, breach of fiduciary responsibility, or other financial misconduct
  4. Felony convictions occurring after August 21, 1996, under federal or state law, related to unlawful manufacture, distribution, prescription, or dispensing of a controlled substance.
Criminal Background Screening: All providers and applicants covered under this policy must agree to a criminal background screening…Individual provider applicants must agree to a criminal history screening by completing and submitting MSA-4678 Medical Assistance Home Provider Agreement to MDCH. Approved and existing individual providers will be periodically reviewed and rescreened by MDCH.

Provider agencies will be held to the same requirements for their employees.

Sanctions: For any provider found to be in violation of any of the four mandatory exclusions listed above, MDCH may terminate or deny enrollment in the Michigan Medicaid program.

Providers will be notified within 90 days of initiation of a payment suspension. The notification will include the general allegations as the to nature of the suspension action, the period of suspension, and the circumstances under which the suspension will be terminated. Providers may submit written evidence for consideration through the administrative appeal process. All payment suspensions will include referral to the Office of Health Services Inspector General.

For complete information on criminal convictions, sanctions, appeals processes, etc., refer to the proposed policy.

Michigan: HCBS Waiver Conference - 11/18-19/2014

This is a conference on Home and Community Based Medicaid Waivers sponsored by the Michigan Department of Community Health and the Michigan Association of Community Mental Health Boards (MACMHB).


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


November 18 & 19, 2014
Kellogg Hotel & Conference Center
55 South Harrison Road, East Lansing 48823

Children s Waiver Program (CWP)
Habilitation Supports Waiver (HSW)
Autism Applied Behavior Analysis (ABA) Benefit

Conference Objective: This conference will provide technical assistance and training on the implementation and maintenance of the Children s Waiver Program (CWP) and the Habilitation Supports Waiver (HSW), clinical issues, and administrative functions relevant to these waivers. Additionally, this conference will provide training in ASD, evidence based services, highlight programs across the state, and provide technical assistance on implementation of the Medicaid/MIChild Autism Benefit.

Technical assistance and training on implementation and maintenance of the Waiver for Children with Serious Emotional Disturbance (SEDW) will now occur as a part of the annual Wraparound Conference to be held at Shanty Creek Resort on August 18-20, 2014.

Who Should Attend: Case managers, supports coordinators, clinicians, behavior analysts, administrative staff, providers, autism coordinators, people receiving services and family members.

Special Rate: A special $20 conference rate will be offered for people receiving waiver services and their family members. A limited number of scholarships are available to people who receive services and their families. Scholarships may cover registration fees, overnight rooms, travel expenses, meals and child care. Deadline to request scholarship: September 12, 2014. To request a scholarship form, contact Chris Ward at or 517-374-6848.

Continuing Education Credits for Licensed Social Workers: The Michigan Association of Community Mental Health Boards (MACMHB), provider #1140, is approved as a provider for social work continuing education by the Association of Social Work Boards (ASWB), through the Approved Continuing Education (ACE) program. MACMHB maintains responsibility for the program. ASWB Approval Period: 11/10/13-11/10/16. Social workers should contact their regulatory board to determine course approval. Exact hours are pending.

Overnight Accommodations/Directions: The Kellogg Hotel & Conference Center is located in East Lansing adjacent to Michigan State University. Our special guestroom rate is $75 per night. 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,; if you have any questions, please call (517) 374-6848.

Christina Ward, Administrative Executive Michigan Association of Community Mental Health Boards
426 S. Walnut Street, Lansing, MI 48933
(517) 374-6848 phone
(517) 374-1053 fax