Saturday, May 28, 2016

Unpaid "natural supports" in a Person-centered Plan are voluntary!

Justice in aging is a non-profit organization “fighting Senior Poverty through Law”. The focus of the organization on seniors necessarily overlaps with issues dealing with disability and poverty. 

This Issue Brief from Justice in Aging, “Voluntary Means Voluntary: Coordinating Medicaid HCBS with Family Assistance” by Eric Carlson, May 2016, discusses the use of “natural supports” in caring for and providing unpaid services to people who receive Medicaid-funded Home and Community-Based Services (HCBS). Although the emphasis here is on seniors receiving HCBS, it applies equally to people with developmental disabilities.

According to the report (p.2), the unpaid caregiving that families provide to people with disabilities are of major significance in the system of care and services: “…Annually in the United States, about 40 million family caregivers provide an estimated 37 billion hours of care. This unpaid assistance is valued at $470 billion."

The 2014 HCBS Rule from the federal Centers for Medicare and Medicaid Services clearly states that when unpaid “natural supports” are included in a person-centered  plan, those services are voluntary. This is from §441.725(b)(5) of the rule that applies to "state plan" Person-centered plans. The same wording applies to services for people covered by various Medicaid waivers. The plan must “Reflect the services and supports (paid and unpaid) that will assist the individual to achieve identified goals, and the providers of those services and supports, including natural supports. Natural supports are unpaid supports that are provided voluntarily to the individual in lieu of State plan HCBS.” [emphasis added]

In many states, Medicaid policy in fact compels family members to provide “natural supports” by limiting the number of service hours available to the beneficiary. These limitations have been based on the state's definition of Medical Necessity that, in Florida, for instance, “denies Medicaid-funded services to the extent that those services are provided for caregiver convenience”. The Policy Brief cites numerous hearing decisions that have denied extending hours that the individual needed for care based on the idea that these hours were needed merely for the “convenience” of the caregiver, such as when the caregiver had to hold down a job in addition to their caregiving responsibilities at home.

[The report also notes that “Medicaid’s voluntariness requirement does not lessen any state-law legal obligation that a parent has to care for a Medicaid-eligible minor child, or that one spouse may have to care for the other.”]

These State definitions of Medical Necessity are clearly in conflict with federal regulations and they have been challenged successfully in some cases cited in the report. Ten other states have rules similar to Florida: Iowa, Kentucky,  Maryland,  Mississippi, Nebraska,  New Hampshire,  New Mexico,  North Dakota, Tennessee, and Wisconsin.

Fortunately, Michigan’s Medical Necessity definition does not include any reference to reducing paid services based on the “convenience” of the caregiver. Unfortunately, families who are providing natural supports often feel coerced into providing or paying for services that should be covered by HCBS and delivered through Community Mental Health agencies. Families are often not informed that "natural supports" are voluntary or they have been threatened with their loved-one losing services, if they do not go along with the plan that CMH wants them to agree to. Other factors include threats to change the way services are delivered in ways that the family feels would be harmful or inappropriate for their disabled family member.

Here is one example from the report (p. 5) that shows what I consider to be the cruelty of public agencies finding excuses in Medicaid law to deny services to people who desperately need them:

Personal Care Hours Denied, Forcing 78 Year-Old Mother/Caregiver to Provide Additional Assistance

David, a 60 year-old man, was diagnosed with multiple sclerosis in 1991. He became quadriplegic and required complete assistance with all activities of daily living. He used a bladder catheter and wore diapers. He transferred from his bed to a motorized wheelchair with the use of a Hoyer lift, and required assistance to operate the chair.

David lived alone, although his 78 year-old mother lived in a separate but adjacent residence. She had breathing problems and required oxygen on a regular basis.

Given David’s significant needs, he had been authorized for around-the-clock Medicaid personal care services (including homemaker services and companion care). He also was authorized for seven hours weekly of skilled nursing services, in order to provide catheter care and set up medications.

Based on a computerized recommendation, David’s managed care organization reduced his personal care authorization from 168 hours weekly (around-the-clock coverage) to 51 hours. An appeal was filed on David’s behalf, arguing that he could not request help in case of an emergency, and had a history of going into a coma-like state when suffering urinary tract infections. The appeal request cited evidence that David had fared poorly in a nursing facility, and had improved significantly after being supported with adequate services at home.

In justifying the reduction, the MCO claimed that weekly service hours exceeding 51 hours were for the convenience of the mother. The hearing officer, however, rejected this claim, finding that the evidence did not support the requested reduction. The hearing officer noted that the MCO was requesting roughly a 70% decrease in personal care hours (117 ÷ 168 = 69.6%), and cited David’s care needs and the mother’s own health limitations.

Among the observations and recommendations coming from the report are these:

“…No family assistance can be truly voluntary if it is needed to compensate for reduction or termination of a Medicaid-funded service.”

 “Definitions and service authorization procedures should clearly establish that a family’s personal care services are only to be taken into account if the family member is legally obligated to provide those services, or the family member has volunteered. Also, to honor the concept of voluntariness, a volunteering family member must have the ability to change his or her mind, if for whatever reason the family member no longer wishes to perform the services in question.”

I agree.

Thursday, May 26, 2016

Severe Mental Illness: Treatment before Tragedy?

San Francisco Bay Area mother, who believes the mental health care system is failing patients, is fighting for change. 

[Sorry about the ads!]

Wednesday, May 25, 2016

Michigan: Recommendations to stabilize the Home Care Workforce

This if from the PHI National Blog about a recently released report from Michigan. It is about the need to stabilize the workforce of Direct Support Professionals who work with people with disabilities and the aging population. PHI is a national organization “working to strengthen the direct-care workforce and prepare our nation to care for a growing population of elders and people with disabilities by promoting effective national and state policy solutions.”

From the PHI blog:

REPORT: Better Wages and Benefits Needed to Stabilize Michigan Home Care Workforce

by Matthew Ozga
May 25, 2016

Michigan's inability to retain a "qualified, competent" workforce of direct support professionals (DSP) must be remedied by, among other measures, immediately improving DSPs' wages and benefits, a specially convened workgroup concluded.

The Workgroup on the Direct Support Workforce, convened by the legislature last year to study the stability of the DSP workforce in the face of increased staff vacancies, unanimously recommended that DSPs earn at least two dollars per hour more than the state minimum wage (currently $8.50/hour and rising to $9.25 by 2018).

The average starting wage for Michigan DSPs is just $8.69/hour, and experienced caregivers earn an average of just $9.62, the workgroup reported. Nursing assistants in Michigan, meanwhile, earn an average hourly wage of $13.25.

The Workgroup also said that immediate steps should be taken allowing DSPs to earn paid leave….

Read the full report here… 

Direct Support Professionals, in their own words:

“In my home I have six staff and five subs who currently work under me. All of them have been with me for more than a year. Some have been working with developmentally disabled individuals as long as I have (37 years). We are African, African American, Asian, and white. We are young college students, single moms, and middle aged fuddyduddies. And when I asked all of them why they do what they do they simply reply ‘I like it’. This work tends to grab a hold of you. It tends to redevelop who you are. I even know a teacher who after teaching all day comes and work for us.”

"This is an important job, not a starter job or a stepping stone job. The people we serve are important people who play an important role in our society.”

Thursday, May 19, 2016

Michigan Dental Health

This is an overview of oral health in Michigan, including vulnerable populations, such as seniors, pregnant women, low-income children and other special populations, who are at risk for poor oral health outcomes.

This is part of a presentation from the Dental Access Project of the Michigan Council for Maternal and Child Health.

More information on the Michigan Dental Access Project: 

Full Report

Interviews with stakeholders

Michigan Maternal & Child Health (MCMCH) Website

The Michigan Dental Access Project has been studying legislation that would allow for Mid-level Dental Therapy as a way to alleviate the need for increased access to dental care. Someone with specialized training or a degree, beyond that of a dental hygienist and similar to that of a physician's assistant or nurse practitioner, could then provide some dental services under the supervision of a dentist that are not currently authorized.

Wednesday, May 18, 2016

Michigan updates on implementation of the Home and Community-Based Services rule

Under the federal 2014 Home and Community-Based Services [or Settings] rule, states must submit transition plans to the federal Centers for Medicare and Medicaid Services (CMS) describing how they will implement federal policies on community integration. Part of that process is to determine whether settings using HCBS funding are in compliance with the federal rule. Michigan will use surveys to make this determination.

Home and Community-Based Services are often referred to as Medicaid Waiver services, because they allow the state to waive some Medicaid requirements in order to use funding in non-traditional ways to serve different populations of people with disabilities.

For people with disabilities who live in their own or their family’s home and receive residential supports funded by HCBS, their residences are presumed to be in compliance with the rule and they will not be part of the residential survey. For people not living in their own or their family’s home, the state will survey every provider of HCBS services and the people who receive HCBS services to evaluate whether the setting complies with the rule.

Michigan’s Habilitation Supports Waiver (HSW) is a Medicaid Waiver that provides services to people with developmental disabilities. The state has other Medicaid Waivers for different categories of the disabled population and people using these waivers will also be surveyed. HSW surveys will be conducted by the Developmental Disabilities Institute (DDI) at Wayne State University in Detroit.

The surveys for providers and participants in the HSW are available for review on-line, but the actual surveys will be conducted by the DDI after notifying providers who will then notify HCBS participants of when the survey will take place. DDI will cover 50% of providers and participants before October 1st, 2016 and 50% after October 1st, 2016.

If you are a guardian or family member of a person who receives HCBS and the person will need your assistance in answering survey questions, the best course of action is to tell the providers of services that you want to be informed of when the survey will be conducted and that you want to participate. If you have a family member with cognitive disabilities, it would also be a good idea to review the survey questions. I found that for my sons many of the questions were not aimed at people with such severe disabilities and that certain answers could be misconstrued as indicating that their services do not comply with the federal rule. Exceptions can be made to parts of the rule for health and safety reasons, but these must be included in the person’s Individual Plan of Services (ISP). Keep that in mind for your next Person-Centered Planning meeting.

For more information on the survey process:

Frequently Asked Questions

Surveys of providers and HSW beneficiaries with general information from DDI including surveys in Word document format

Participant surveys

Residential provider Survey

Non-residential provider survey Non-residential services include HCBS-funded programs such as employment, skill-building, prevocational, and day programs. 


Michigan’s revised State Transition Plan for HCBS

Michigan revised its State Transition Plan for HCBS for public comment in December 2015. The state then revised the plan further and responded to comments. The Revised STP was sent to CMS on March 15, 2016 for approval.

The first part of this document includes comments on the plan with responses from the Michigan Department of Health and Human Services. The rest of the document is the latest revision to the STP.

Here is more Information on the federal HCBS Rule and State Transition Plans.

This is the Michigan Website on HCBS Transition.

Sunday, May 15, 2016

Is the Federal Home and Community-Based Settings Rule just one more excuse not to fund needed DD services?

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

Friday, May 13, 2016

Village Elementary in Hartland, Michigan: A caring and inclusive community

Every year for 13 years, Vanessa the duck has been laying her eggs in the courtyard at Village Elementary School in Hartland, Michigan, and every year the school helps Vanessa and her ducklings reach their pond and permanent home.

School Clears Out Its Halls Each Year To Help Duck Family Get Home

Vanessa the duck has been laying her eggs in the school’s enclosed courtyard for 13 years.

Thirteen years ago, Vanessa the duck had a little problem.

Her ducklings had hatched in the courtyard of Village Elementary School in Hartland, Michigan, but there was a big ol’ school building in between her nest and the pond where she needed to bring her new family. Fortunately for her, students and staff, led by teacher Ruth Darrah, had a plan, Good Morning America reports.

Darrah made a path through the school’s hallways, ensuring people were out of the way so Vanessa could safely lead the ducklings to the water.

That first year, Vanessa was a little confused about exactly what route to take through the school, but now she breezes through in just a few minutes as soon as someone opens the door for her.

“She has it down by now, after 13 years,” Darrah told Livingston Daily.

“It’s the best thing you will ever witness,” Principal William Cain told Livingston Daily.

Michigan DD Council seeks public comment on 2017-2021 Five-Year Plan

from the Michigan DD Council: 
The Michigan Developmental Disabilities Council (MDDC) has drafted its 2017-2021 State Plan.

Goals and objectives are identified to improve the availability and quality of services and supports, to assure equal rights and opportunities, and to further community integration and inclusion for individuals with developmental disabilities and their families.  The State Plan provides the basic framework for how Council funds will be used and what activities the Council will be involved in.

We appreciate your time in providing comments and feedback. Please send any comments or thoughts you might have.  There are three (3 ) ways to provide feedback.

Email to:

US Mail to:      Michigan Developmental Disabilities Council
                        5-year Plan Public Comment
                        c/o Tedra Jackson
                        320 S. Walnut
                        Lansing, MI 48913

Or via Survey Monkey by clicking here .

Additionally, there will be two days where the public can review the plan in-person at the DD Council Office. Friday, May 27th from 8:30am to 5:00pm and Wednesday, June 15th from 8:30am to 5:00pm. The DD Council office is located in the Lewis Cass Building, 320 S. Walnut, Lansing, MI 48913.

We will receive feedback until 12:00 PM Monday, June 27, 2016.

Thank you for your help as we plan for the Councils activities over the next five years. If you have any questions or need assistance please contact the Council office at 517-335-3158.

Link to DD Council 2017-2021 Five-Year Plan5 year


For more information on the Michigan DD Council, see the 2015 Annual Report

Friday, May 6, 2016

Michigan: Update on Home and Community-Based Services Transition Project

This is from Phil Kurdunowicz at the Michigan HCBS Program Transition Project. Every state has a transition plan to implement the 2014 Home and Community-Based Services rule from the Centers for Medicare and Medicaid Services (CMS). This update concerns surveys that will assess individual settings for "HCBS chacteristics". For people with DD covered by the Habilitation Supports Waiver, surveys of all HCBS-funded programs will begin this month, May 2016. People with DD living in their own or their family's home will be assumed to be compliant with the HCBS rule and will not be part of the survey unless they also attend a program funded by the HSW waiver. 


Dear stakeholders,

The Michigan Department of Health and Human Services provides Home and Community-Based Services to individuals in the Medicaid program. These services help Michigan citizens with disabilities or other health issues to live at home or in the community. The Department offers many of these services through “waivers,” which were approved by the Centers for Medicare and Medicaid Services.

The Centers for Medicare and Medicaid Services released a new rule in 2014 for home and community-based services waivers. The Department has since developed a statewide transition plan to bring its waiver programs into compliance with the new rule.

As part of the transition process, the Department must determine whether settings under these waivers have “home and community-based” characteristics. For this purpose, the Department has developing a set of “survey tools” to assess individual settings for home and community-based characteristics.

The Department has published the final versions of the survey tools for the Habilitation Supports Waiver to the project website. Survey tools that have been finalized by the Department can be found on the Department’s website at >> Health Care Coverage >> Home and Community-Based Services Program Transition.

The Department will start the statewide assessment process for the Habilitation Supports Waiver [for people with DD] in May 2016. The Department will work with the Developmental Disabilities Institute of Wayne State University to conduct these surveys.

If you would like to learn more about the survey process, please visit the following website:

If you have questions about the survey process, please send an email to

If you have questions about the Home and Community-Based Services rule or the Statewide Transition Plan, please send an email to

Thank you for your continued support for Michigan’s home and community-based waiver programs.

Best regards,

The HCBS Program Transition Team

Frequently Asked Questions regarding the survey process