Michigan: The Burden of Funding Crises should not be borne by People with Disabilities

Some Michigan Community Mental Health Agencies and administrative regional entities called PIHPs (Prepaid Inpatient Health Plans) are facing diminishing revenues in combination with demands for more services that they are required to provide. Washtenaw County appears to be having difficulties similar to those in Western Michigan, though not as extreme (yet). 

When the response to these fiscal crises is to reduce services to people the agencies are obligated to serve, families and their disabled family members need a refresher course on their rights while demanding that local and state agencies sort out how these shortfalls in funding will be resolved. 

This is a note from DD Advocates of Western Michigan with some good advice on what to do when service reductions are contemplated:

“Note that a Medicaid recipient is entitled to services ‘appropriate to their needs’, not subject to available (or reduced) budgeting. It is the CMH's responsibility to provide all of those appropriate services. It is the state's responsibility to provide adequate funding. The Regional Entity [the PIHP] is the intermediary in this process, possessing the contract for providing eligible Medicaid services through it's provider network and CMH agencies. If the Region does not have adequate funding, then it must press the state to allocate more funds for these needed (required) services. Oversight of individual CMH agency funding and the region's budget is a critical component of its mandate. … Encourage the prohibition of ‘rationing’ in any shape or form. ‘Utilization management’ can just be a buzzword for rationing, and is what the medical insurance business uses to limit their financial exposure. The more they restrict or make difficult to access, the better their bottom line. If a service is appropriate and needed, is Medicaid allowable and requested via the PCP [Person Centered Plan], then insist on its delivery, or challenge any such failure to provide it via the Medicaid Fair Hearing process. Demand what is your entitlement. It's their job to figure out how the provide it.” [emphasis added]

Michigan: Important information for Washtenaw County DD adults using "self-determination"

This is an email from a parent who asked me to pass on this information to anyone who receives services from the Washtenaw County Community Mental Health agency using Self-Determination arrangements. To learn more, a contact phone number and email is provided below:

This email contains some very important information for individuals and their families who are receiving community living support services (CLS) using a self - determination (SD) arrangement in Washtenaw County. Was your CLS budget reduced in May of 2015? Are you currently not receiving an adequate level of CLS services? Are you paying out of pocket for transportation, CLS services, community activity, or training expenses?

If yes, you are probably aware that in 2015, CMH changed the way in which they determine the self - determination budget. Instead of basing the SD budget on the individual's needs, they have essentially "capped" the SD budget and are forcing everyone to fit into a budget based solely on the number of CLS hours. CMH previously determined individual needs in the Person Centered Plan (PCP) and then authorized them in the Individual Plan of Service (IPOS.)

There is no longer "individualization". Instead the number of hours determine the budget, not the needs for transportation, training, or community activity. Although you may not feel a huge impact at the present, in the future if you or your loved one needed additional supports, such as double staffing due to an injury, there would be no additional funds or method to accommodate the need using self-determination. This method of calculating self- determination budgets is contrary to federal law and just plain wrong.

You do not have to accept this. If you did not file an appeal in May of 2015, you can still join other families in Washtenaw county who are fighting CMH to revert to the former, correct way of determining the SD budgets based on individual needs and medical necessity.

There is currently a lawsuit against Washtenaw CMH, not for monetary damages, but to force them to follow the law and perform the budgetary process correctly. This may greatly impact us and our loved ones in the future, You can join the lawsuit at no expense to you or your loved one.

For further information please call 734-665-7303 or email washtenawsd@icloud.com.

Thank you for taking the time to consider helping all the 150+ families in Washtenaw County who are affected by this.

*******************************************

From The DD News Blog:

See also, Michigan Medical Necessity Criteria for Medicaid-funded services.  

Take note of the last paragraph: "A PIHP may not solely deny services based solely on present limits of the cost, amount, scope, and duration of services. Instead, determination of the need of services shall be conducted on an individualized basis."

The MI Dept. of Health and Human Services offers guidance on self-determination policy on this Website.

See also Self Determination Policy from 2012 from the MI Dept. of Community Health (now the MI DHHS).

Information on Sub-minimum wages for people with disabilities and appeal rights, PART 2

How to file a complaint with the U.S. Department of Labor, Wage and Hour Division regarding sub-minimum wage certificates:

This is a flyer listing the type of information you need to include with your complaint. It states that, "All services are free and confidential, whether you are documented or not. Please remember that your employer cannot terminate you or in any other manner discriminate against you for filing a complaint with WHD."

The complaint should be filed through a local Wage and Hour Division office. Here is a map that shows you where the district offices are located in your state. 

Michigan has two district offices:

Detroit, MI, 48228
211 W. Fort St.
Room 517
TEL: (313) 309-4500

Grand Rapids, MI 49503
800 Monroe Ave., NW
Suite 315
TEL: (616) 456-2004

The Midwest Regional Office that includes Michigan is here:

Midwest Regional Office
230 S. Dearborn Street, Room 530
Chicago, Illinois 60604-1757
Karen Chaikin, Regional Administrator
(312) 596-7180

Here is information on how to make a Freedom of Information Act request from the Wage and Hour Division of the Department of Labor.

If it were me filing a complaint, I would want to know more about the procedures and timelines for filing. People at your local Hour and Wage Division should be willing to answer questions about the investigation and how you proceed with your challenge to a wage certificate. Ask for a copy of the wage certificate that applies to you or where you can obtain a copy of it. 

Reach out to your state Protection and Advocacy Agency for advice and assistance. Here is a map to locate Protection and Advocacy in your state.

You may want to consider requesting changes to your "Individual Plan of Services" (IPOS) by scheduling a Person-centered Planning meeting to discuss alternatives to your current work situation. This may include looking into supported employment services that provide support for working in an integrated, competitive work setting and other alternatives.   

The Individual Program Plan Under Fire : What every Parent and Guardian Must Know

The Individual Program Plan (IPP) Under Fire: Three Things Every Parent and Conservator Must Know from Autism Society SF Bay Area on Vimeo.

I am generally critical of the ARC and its reputation nationally for imposing its ideology of full inclusion on people with disabilities and their families regardless of need or individual circumstance. This presentation, however, by Barbara Maizie, Executive Director of the ARC of Contra Costa County, California, and a member of Keeping the Lanterman Promise on the importance of the Individualized Program Plan (IPP) is the best I have ever seen. It was part of the Autism Society San Francisco Bay Area's 2015 Conference, "Let a Thousand Flowers Bloom: The Bay Area Adult Autism/DD Programs and Housing Summit." The conference took place October 23, 2015 at Santa Clara University and featured more than 50 speakers.

In Michigan, the equivalent to the IPP is the Individual Plan of Service (IPOS) required by state law for everyone receiving  mental health services through the Community Mental Health system. Her message applies here and in other states that require DD services as an entitlement under protections in their state laws.

Update on Barbara Maizie: I had never met Barbara except through this video. Sadly, she was diagnosed with a brain tumor earlier this year and died on August 13, 2016. It makes me appreciate even more the influence that one person can have. 

Legal Guardians: HCBS rule confirms decision-making authority

[Here is a link to a Website that tells you more than you ever wanted to know about implementation of the new HCBS rule. These are previous blog posts on the subject of the new rule and its repercussions.]

The  federal Home and Community Based settings rule places the individual with a disability at the center of a Person Centered Planning process.  This is as it should be, allowing for the reality that many people with intellectual and developmental disabilities are limited in their ability to make or communicate decisions for themselves or to exercise their rights on their own behalf and for whom legal guardianship may be necessary. With my own sons, who have profound physical and intellectual disabilities this is certainly the case. Were my husband and I not able to represent their interests through the authority that we have as legal guardians, they would be continually at the mercy of whomever was in control of a particular situation - group home staff, a community mental health agency, the provider agency that staffs the group home, medical personnel, etc. We include in this group some disability advocates who claim to know our sons needs better than we do. Some even claim that it is possible to interpret our sons' facial expressions and body language as intentional communication that confirms the advocates’ notion of what choices are best for them.

Most guardians of people with developmental disabilities are parents, siblings, or family friends of the person with DD. They are not perfect and they make mistakes as often as the next person. The difference between family members and friends and all other acquaintances, professionals, and advocates who wish to weigh in on how other people should live their lives is that when things go wrong family and friends feel it personally and are usually quick to react in ways that make things better. Others who are not so personally connected may not be around to suffer the consequences of their own and other peoples mistakes. They also have their own interests to think about, a perfectly human trait that does not necessarily make them bad people. People who know our sons and care about them are often invaluable to us in making informed decisions for our sons.

Guardianship for people with DD in Michigan is under the jurisdiction of state probate courts that are required to follow state law. Built into state law are numerous protections for the individual and procedures designed to assure the accountability of guardians. Here is a the Washtenaw Trial Court Website on guardianship with links to pertinent sections of the the Michigan Mental Health Code.

The HCB settings rule confirms the authority of court-appointed legal guardians to make decisions authorized by state courts. People with disabilities who do not have legal guardians may chose someone to represent them in the person centered planning process: “In §441.671, we proposed to define the term ‘individual’s representative’ to encompass any party who is authorized to represent the individual for the purpose of making personal or health care decisions, either under state law or under the policies of the State Medicaid agency. We did not propose to regulate the relationship between an individual enrolled in the State plan HCBS benefit and his or her authorized  representative, but noted that states should have policies to assess for abuse or excessive control and ensure that representatives conform to applicable state requirements.” [p. 2994 of the Federal Register of 1/16/2014; Definition of Individual’s Representative] [emphasis added]

In addition, is this comment on the authority of legal guardians: “We note that where a legal guardian, conservator, or other person has the sole authority under state law to make decisions related to the individual’s care, the state must comply with the decisions of the legal surrogate.” [p. 2995 of the Federal Register of 1/16/2014; Definition of Individual’s Representative][emphasis added]

Furthermore, under §441.740 of the final rule on Self-Directed Services (or Self-Determination as it is known in Michigan), the rule states that, “the state may choose to offer an election for self-directing HCBS. The term ‘self-directed’ means…services that are planned and purchased under the directions and control of the individual, including the amount, duration, scope, provider, and location of the HCBS. For purposes of this paragraph, individual means the individual and, if applicable, the individual’s representative as defined in § 441.735.” [p.3038 of the Federal Register of 1/16/2014, § 441.740 Self-directed services] [emphasis added]

In other words, state Medicaid agencies may have policies to regulate the qualifications of someone who has been chosen by the individual as a representative, but the qualifications of court-appointed guardians and the monitoring of their conduct remains under the jurisdiction of state courts, not the state Medicaid agency.

One Family's Quest for True Integration and Person-Centered Care

[This is from the Fall 2014 VOR print newsletter, "The Voice - news and views of VOR Supporters". Helen Norcross lives in Wyoming.]

Helen Norcross is a firm believer in community integration and a person-centered approach to planning care.

She has been a lifelong advocate for her son, Josh, who has profound behavioral challenges, and recently quit her job in corrections/treatment to work for the Wyoming Independent Living Center.

She knows how integration should look for her Josh, but seriously questions whether the State of Wyoming does.

"For me, community integration and true inclusion means my son is provided with opportunities to live his life to the fullest extent of his abilities while keeping him and others in our community safe," explains Norcross. "It's about really focusing on Josh. It's about person-centered supports, with an emphasis on the person."

Josh's early years

For years, Helen and her family attempted to strike a balance between integration and safety. This involved wiring her family home with buzzers so that they knew where her son was at all times.

"Josh's disabilities make him unsafe for other people and animals," shared Norcross. "We had a responsibility to keep our younger son safe, as well as our understanding neighbors. Still, to live with alarms that the whole neighborhood could hear if Josh went out the door was exhausting and stressful --and certainly did not mean 'community integration' for him."

As Josh grew so did his challenges and needs. "We were all prisoners in our own home, completely isolated," she said.

So, Norcross called in that promise made by the State so many years ago when they adopted Josh, only to find that he along with about 500 other eligible Wyomians with disabilities, faced years of waiting.

Hope evaporates

In March 2014, after over a year of back-and-forth negotiations, the State had finally approved Josh's waiver application as an "emergency case," and, recognizing Josh's profound needs approved funding at the highest level of care and supervision allowed under the waiver.

With approval in hand, Norcross set out to find a provider willing to serve Josh. After 3 months of looking and rejecting providers, or being rejected by providers that did not have the staff or experience necessary, a quality provider was identified and willing to serve Josh and, much to the gratitude of the Norcrosses, also provide for day habilitation which his waiver funding did not cover.

However, Norcross' diligence in finding the right provider for Josh's needs--a person-centered approach to delivering services--backfired because not enough money was spent on Josh's care while Norcross was looking for a provider. The Wyoming Behavioral Health Department assumed Josh did not need these services and significantly cut his approved funding.

"No one thought to call me," said Norcross. "I could have told the Department that the services were not used because I was still trying to find a provider. Josh's needs certainly didn't change. Yet, we were back to square one."

She now wonders just how the Wyoming Behavioral Department defines "person-centered." Having worked in treatment for so many years and also raising Josh, Norcross understands the person-centered approach better than most.

"I've had intensive training in this approach and have seen it work with the most challenging individuals," Norcross said. "It's really about treating people like people and respecting differences in choices and needs."

The Journey Continues

Norcross continues to advocate for Josh using a person-centered approach and will fight to make sure that all funding taken from his Plan of Care will be restored.

Still, she is frustrated by the fight and worries for other families who don't know the system as well.

"Because Josh's behaviors affect other people, putting the community at risk if funds are not restored, there should be urgency to getting him appropriate  care," said Norcross. "My advocacy is critical in helping the State see that urgency, but what about other families who are suffering in silence? I worry about these people."

Norcross also questions how a "systems change" approach toward full inclusion and integration can also be person-centered care.

"'Integration' is being pushed as the ideal, but blindly so," said Norcross. "My family home, wired like prison, is considered 'integrated.'"

Norcross hopes her work with the Wyoming Independent Living Center will provide her opportunity to reframe the dialogue.

"We've lost sight of concepts like 'community integration' and 'person-centered supports,'" she says. Families, advocates and elected officials must re-direct collective focus away from 'bricks and mortar' and back on each individual."

My son's needs are unique and personal to him," added Norcross. "What he needs and what I want for him will be different than another individual and another family. Our system must be responsive to individual needs and choice. I am a fighter and I do not give up. I will continue working to change that."

High expectations for people with DD and the danger in imposing unachievable goals

2-year old Ian

This is what happens when I clean off my computer table. I find things I forgot I had written. As often as not, I am glad to get them off the table and into the trash, but this one is about gentle Ian, my younger son who is now 28 years old and has profound physical and intellectual disabilities. I wrote it before a routine Person-centered planning meeting, not because we had big issues to discuss or dramatic changes that needed to be made, but because I was bothered by the expectation that sweet Ian would achieve "outcomes" that were never written for him. They were written to please the system that demands that the people it helps prove their worth by meeting meaningless goals and pie-in-the-sky expectations:

To the Person-centered planning team -

I have some concern about the wording of “outcomes” on Ian’s [2011] PCP. I am sure it is clear to everyone who knows or works with Ian that he needs total care and this is reflected in the description of most of the services he receives. Because of his limitations in communication, there is often no way of knowing for sure why he sometimes “cheeks” his medication or refuses to eat (a rare occurrence) or does not feel like “participating” in some activities [these were mentioned as problems in his PCP].

The statement that “Ian will to the best of his ability, comply with all recommendations and guidelines from the IPOS [Individualized Plan of Service]", for instance, seems to assume abilities that he may not have or that he cannot communicate to others.

Where the PCP says that “Ian will attend appointments as scheduled but will need the help of support team to do this”, it does not convey the severity of his disability. He does not just need “support”, but total involvement by staff to provide him with critical services that he cannot survive without.

Such expressions as “Ian will work with staff at meal times …” does not convey his reliance on the skill and sensitivity of staff to feed him what he needs in a way that gives him the enjoyment that we all expect from mealtimes.

I suspect that this approach to writing the PCP and IPOS comes from a philosophy that emphasizes abilities over disabilities, independence over reliance on others, and an optimistic view that everyone can live, work, and play in the community, just like everyone else. There is nothing wrong with this when it works for particular individuals, but for Ian, it is crucial to recognize the degree of disability that he lives with and not gloss over his dependence on others for his survival.

Ian has a sweet and charming manner in relating to other people, a gift that does not go unrecognized by his family, friends, and the people who work with him. But when the expected “outcomes” written in his PCP far exceed his abilities, it not only sets him up for failure, but the people who provide the services appropriate to his needs, also appear to fail, because Ian cannot meet impossible goals.

When everyone is looking for ways to save money on people like Ian, setting him up for failure could have dire consequences.

Please attach this statement to Ian’s PCP.
 
Fortunately, the people at the meeting were not heavily invested in the methods of the system and the wording was changed. Ian lives in a group home with his brother Danny in Ypsilanti, Michigan.