Monday, February 19, 2018

Protect, Provide, and Prosper: Securing the future for Families with Special Needs



from St. Louis Center in Chelsea, Michigan:


You are invited to a seminar on Securing the Future for Families with Special Needs

St. Louis Center Family Welcome & Orientation Center 

Thursday, February 22, 2018

7 - 9 p.m.
16195 W. Old US Hwy. 12
Chelsea, MI 48118 

Please contact Joe Yekulis, PR Director, at 734-475-8430 for more information or to register. To learn more about St. Louis Center, visit the website at www.stlouiscenter.org .

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Many families of children or adults with special needs have a difficult time navigating the future for their loved ones, and advanced planning can ensure a positive quality of life for years to come. 

In this program, our guest speakers will address two important issues. The first is an important issue for parents of adult children relating to the early onset of Alzheimer’s disease in persons with I/DD, and the second issue will address the importance of parent advocacy in accessing government services for a loved one. 

Please join us for an informative evening of education and information sharing among parents dealing with these important subjects. 

Accessing the “Systems” Maze 

Speaker: 

JUDITH GREENBAUM, PHD has been an advocate for people with I/DD for nearly half a century. She possesses a PhD in Special Education and is also the parent of an adult child at St. Louis Center. Her Bachelor’s Degree and Doctorate are both from the University of Michigan. Judy was instrumental in leading a grass roots effort to pass the Michigan Mandatory Special Education Act in 1971 which made it mandatory for schools to educate  children w/IDD from birth to 26 to help them to reach their maximum potential. Her last book published in 2007 is titled, "Life Planning for Adults with Intellectual and Developmental Disabilities". 

Coping with Alzheimers

Speaker:

DEANA FISHER, MSW became the COO of St. Louis Center in March 2017 following a career of working in Wayne County and the City of Detroit. Before arriving in Chelsea, she served as Director of the Children’s Center in Detroit where she supervised foster care, licensing and the Young Adult Program. She also gained valuable experience at the Lula Belle Stewart Center, the Children’s Aid Society, Families First, the Northeast Guidance Center, and the Wayne Center in Detroit. She has a B.A. in 
Social Work from Alma College and an MSW from Wayne State University. She was recently trained as an instructor for the National Task Group on Intellectual Disabilities and  Dementia Practices. 


Tuesday, February 13, 2018

Saline, Michigan: Families take the initiative in creating new housing for people with DD

Read and listen to a Michigan Radio (NPR) interview, “People with disabilities at heart of new Saline neighborhood” by Doug Tribou, 1/29/18. Patty and Karl Rabe of Saline, Michigan, down the road from Ann Arbor, have joined with other parents and a local developer to create a new neighborhood that will include housing for their adult children with DD.

Their son, Bill Rabe, is 28 years old and lives with his parents. He has developmental disabilities including severe speech and vocabulary problems and needs someone around to help him. He will be living in a condominium in the new neighborhood and sharing resources with other adults with DD. His parents will also move into the planned community and be close by if Bill needs their help. According to the interview, “..Bill holds down two part-time jobs, is a Special Olympian, and likes to watch movies and play video games. His favorites are hockey games. “

The new neighborhood is called Maple Oaks; groundbreaking took place in October 2017. This project is the result of years of planning by the families, the developer, and the community of Saline. There is a great deal of excitement looking forward to the success of this project, in stark contrast to other communities that have reacted with fear and ignorance at the prospect of providing homes for people with DD.

According to the Saline Sun Times News in an article“New Residential Housing Development Planned For Saline In Demand" by Angelo Parlove from 7/14/17, “A project team led by William Godfrey, who is the principal at Three Oaks Development and Advisory Services in Ann Arbor, plans to bring a multi-family development containing 34 units, which will consist of 10 single-family homes, eight duplexes and two community buildings which will hold another eight units each.”

Another article in the Saline Post “Saline Approves Final PUD for Development of 600 North Maple Road” by Tran Longmoore, 07/25/2017, describes the changes to zoning for Planned Unit Development or PUD that allows mixed density residential development for this project.

The developer William Godfrey said of the people moving into the new community, “some families already reside in Saline, while some are coming from out of town. Buyers include empty nesters who want to live close to family, families with children with special needs and young families who want to live near the middle school.”

The NPR interview and the additional news articles give a good idea of the intricacies of planning a neighborhood that prides itself in including housing for people with developmental disabilities.

Desiree Kameka from Madison House Autism Foundation, who was interviewed by NPR,  lauds the Saline community for providing stable housing for adults with DD. “Kameka says unlike group homes, the families will own the condos, giving them more control. Most of the young adults qualify for some government funded in-home care. The families are hoping to pool some of those resources…'They know that that housing will be secure...that their loved ones will never be kicked out, just getting placed in the next empty bed counties away, because a provider decides they don’t want to serve that person anymore.’"

Not everyone agrees that this project is a good way to integrate and house people with disabilities in the community: 

“Dohn Hoyle thinks the Saline project falls short. Hoyle is the public policy director for the ARC Michigan. Because the condos will have 24-hour care and house only residents with disabilities, Hoyle sees less independence than what’s being marketed…’It will be their own place in the sense of their own condo, but remember what you’ve done is you’ve set up a group-living situation [by] having everybody who lives there have a disability,’ Hoyle said.”

Dohn Hoyle appears to be discounting or overlooking friendships and a desire to live together among some people with disabilities, the opportunity to rein in costs and improve services by sharing resources, the choice of people with disabilities and their families to live in such a community, and the excitement and enthusiasm by the Saline community for the success of the new neighborhood. 

Let’s hope that Hoyle does not lobby the State to refuse funding for services to the disabled residents as he has done in the past: 

The ARC Michigan: Our Way or the Highway

The ARC Michigan to the State : Stop funding congregate settings

Thursday, February 8, 2018

A Disability Organization Misleads Self-Advocates and Families to Promote a Call-in Campaign to Legislators

TASH, an influential disability organization that “advocates for human rights and inclusion for people with significant disabilities and support needs - those most vulnerable to segregation, abuse, neglect, and institutionalization”, recently sent out this Action Alert to self-advocates and families:

January 25, 2018

Dear Self-Advocates and Family Members,

We need you to take action right now! Our representatives and senators are hearing from Voice of the Retarded (VOR) and other parent groups that believe we should live in institutions and that the community is not a safe place for us to live. We need to tell them that the community is not bad and there are safe places. We need to tell them that there are many people with disabilities living in the community that are safe and happy, and have the support they need. So please ask your groups to do the following: 

  • Call your legislators and tell them about how you live in the community and how you are happy. 
  • Ask your members and other people with disabilities to write and share their story. 
  • Go visit your legislators and tell them how important community is to you and how happy you are, along with many other people with disabilities that are happy in the community. 
  • Share this alert with others and ask them to do the same. 
Please email your letters to Tia Nelis, TASH's Director of Policy and Advocacy, at tnelis@tash.org.

Thanks,
TASH's Self-Advocacy Committee


As a parent of two sons with profound intellectual and developmental disabilities and as a member of VOR for more than 15 years, I am compelled to respond to the TASH Action Alert to correct misleading information and to stop the misuse of that information to promote a call-in campaign to legislators.

VOR’s Name

The name of VOR is VOR ! The organization was founded in 1983 as “Voice of the Retarded” at about the same time that TASH was changing its name from “The Association for the Severely Handicapped” to “The Association for Persons with Severe Handicaps”. As the terms mentally retarded and the word handicapped were used less frequently, the terminology in federal law began to change. Most disability organizations removed the word "Retarded" from their names and from the discussion of issues related to this segment of the developmentally disabled population.

"The Association for Persons with Severe Handicaps" eventually became TASH, just as "The Association for Retarded Citizens" became The ARC, and "Voice of the Retarded" became VOR. I believe VOR started using the acronym for the organization as its primary identification more than 10 years ago and the name was officially changed with the passage of Rosa’s Law in 2010. Rosa's Law removed the term mental retardation from most federal legislation and substituted the term intellectual disability. The definition did not change, however, and Rosa’s Law did not affect any services, rights, responsibilities or educational opportunities for people with intellectual disabilities.

Institutional vs. Community Living

To say that VOR believes that people with disabilities “should live in institutions and that the community is not a safe place for us to live” is false and misleading. A Policy and Position Statement is on the VOR Website that includes these statements:

“VOR supports both ICF/IID homes and quality community-based service options based on individual need. VOR 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 licensed Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID)." 


and

“VOR supports safe and appropriate quality care in the community. When federally-licensed specialized settings (e.g., ICF/IID) are closed, individuals with profound I/DD, multiple disabilities, serious medical problems, and behavior challenges are removed to 'community-based' settings often with poorly trained staff and inadequate health and safety measures in place. Individuals with severe disabilities living at home or in other community settings often experience the same problems with poor care. By developing and promoting community care standards, VOR aims to address this widespread concern and avoid predictable tragedies, as reported in the media, state audits and peer-reviewed studies.”

Furthermore, VOR’s position on institutional care is consistent with the 1999 U.S. Supreme Court Olmstead decision. 
The importance of individual choice is repeated throughout Olmstead’s majority opinion as follows: “We emphasize that nothing in the ADA [Americans with Disabilities Act] or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.”..."the ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk...Nor is it the ADA’s mission to drive States to move institutionalized patients into an inappropriate setting..."..."For some individuals, no placement outside the institution may ever be appropriate.”..." Each disabled person is entitled to treatment in the most integrated setting possible for that person –recognizing on a case-by-case basis, that setting may be an institution.”


Safety in the Community

Safety in the community for people with disabilities is of paramount importance to most people with disabilities and their families. In January 2018, The U.S. Department of Health and Human Services, the Administration on Community Living and Office for Civil Rights issued a joint report on an investigation of community group homes. According to Disability Scoop in an article about the joint report, “An audit of three states found that officials routinely failed to follow up on incidents ranging from head lacerations to loss of life in violation of federal and state policy. The issues are believed to be systemic affecting people with developmental disabilities residing in group homes across the country.”

In other living situations where people with disabilities live in unlicensed and poorly supervised settings and without sufficient support services, incidents of abuse and neglect occur, but they often go undocumented.

While VOR is concerned with safety in all settings where people with disabilities live and receive services, VOR has never claimed that safety does not exist nor that it is not possible in community settings.

The TASH Action Alert

There is nothing wrong with self-advocates and families telling legislators “how important community is to you and how happy you are, along with many other people with disabilities that are happy in the community,” but the implication in this Action Alert is that VOR is a threat to community living. On the contrary, VOR supports a full array of services and residential, employment, and educational options to meet the needs of a diverse population.

TASH owes an apology to its members, especially to self-advocates and families, whom the organization has misinformed. I hope that, at the very least, future pronouncements by TASH will be checked more closely for accuracy and will avoid unfounded accusations about other organizations.


Jill Barker
Ann Arbor, Michigan

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About TASH

About VOR

VOR Olmstead Resources

"Celebrating the 17th Anniversary of the Olmstead Decision: Opportunities and Choices"

Monday, February 5, 2018

Comments to the IACC from an MD addressing needs of people with severe autism

The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee that coordinates Federal efforts and provides advice to the Secretary of Health and Human Services on issues related to autism spectrum disorder (ASD). The following are comments from Lee Wachtel, MD, a child psychiatrist at the Kennedy Krieger Institute in Baltimore, MD:

Lee Wachtel, MD 
January 17, 2018

Hello, my name is Lee Wachtel, and I am a child psychiatrist working at the Kennedy Krieger Institute in Baltimore, where I run an inpatient unit for children, adolescents and young adults with autism who require hospitalization for severe, often life-threatening, and certainly life-limiting, challenging behaviors. I have been in this position for nearly 15 years, and would like to speak today on behalf of my patients, and their families, many of whom have remained under our care at KKI for years, right into adulthood.

The vast majority of our patients are significantly afflicted, and would be characterized in the DSM5 [Diagnostic and Statistical Manual on Mental Disorders] as having autism requiring extensive supports and with intellectual disability. They don’t come to KKI for their autism or ID, however, but rather for the severe self-injurious, aggressive and disruptive behaviors that they display, often within the context of further severe psychopathology that can run the gamut from anxiety, mood and psychotic disorders, and more. These kids are really suffering, and so are their families. These parents will move heaven and earth for their children – one of the hardest parts of the job is telling moms and dads on our waitlist that we don’t have a bed for their bloody and battered child TODAY – but none of our parents are glad that their child has autism, or see their son or daughter’s autism and associated suffering as part of neurodiversity. In fact, most of the parents would sell their soul for their child to not have autism. As one parent who spent 30 years campaigning for the best services for his son recently told me, “I would walk through perdition’s flames for my son, but I don’t buy into the autism fairytale.”

Not my words, but those of a parent who has walked the autism walk for 30 years. And I hear many such comments. I know very well that this type of response, and the mere existence of the types of severely afflicted autistic kids in our care, flies in the face of the overriding 2018 agenda for autism, where everything is rosy and diverse, and some even suggest the removal of the autism as a psychiatric illness. I would suggest that the DSM5 characterization of autism does not accurately describe the condition, and that there are likely many conditions currently all thrown together into the autism rubric, which only hinders science and our ability to make important advances to help everyone along this range of diagnoses. But I’m less for splitting hairs over diagnosis, and more for making sure that those who don’t currently fall into the happy and hopeful side of the diagnosis – at least not happy and hopeful today, but with the potential for so much improvement – still have a voice, and do not become the black sheep of the autism community just because they aren’t blogging or reciting soliloquies at Lincoln Center. Because these autistic kids with severe behavioral, psychiatric and medical concerns, as well as significant cognitive disability, really do exist, and so do their families, who are less than enamored with autism, and are frankly heartbroken and exhausted. These kids need our understanding and help just as much as the autistic child contemplating best strategies to succeed at college. And these kids will continue to need the support of the autism community as they become adults, as they will not be able to live independently, will require extensive supports and substituted decision-making, and can’t be pushed into models that just don’t meet their unique needs.

I encourage the IACC, and autism community in general to consider several things. First, the IACC needs to prioritize research on the treatment of self-injurious and aggressive behavior. These behaviors are highly prevalent — studies show about 1/3 of autistic kids engage in SIB and over half in aggressive behaviors, yet very little attention is paid to this devastating problem. The IACC should host a panel focused on these dangerous behaviors. Not only are these behaviors dangerous to the children and families involved, but they often preclude participation in inclusive, community-based educational and vocational programs. These behaviors are often physiological in etiology — typically from a co-morbid psychiatric disorder, and do not represent “communication” from non-verbal individuals. It is a medical problem that requires medical solutions.

Second, the IACC must promote a choice-based approach to service provision that ensures adults with aggressive and self-injurious behaviors have a place to go when their families can no longer safely care for them. Some autistic adults have severe behaviors that cannot be managed in community settings. They may not exhibit them all the time, but they need to be somewhere with experienced caregivers who can manage dangerous behaviors when they do occur, with access to professionals who can treat them, as well as structured programs to maximize community access as well as providing satisfying site-based programming. This population needs to be surrounded with well-trained, well-paid aides, because the health and happiness of these adults depends almost exclusively on that one variable. The IACC should write a white paper focused specifically on the service needs of this population.

Finally, we need to invite more parents of severely affected autistic children to have seats on the IACC. These parents represent children who can’t represent themselves, and they require a voice.

Thank you.

Thursday, February 1, 2018

A Glossary of Terms for Understanding both Institutional Care and Home and Community-Based Services for DD

In Michigan, Home and Community-Based Services (HCBS) for people with intellectual and developmental disabilities are funded by a Medicaid HCBS Waiver called the Habilitation Supports Waiver (HSW). The HSW is meant to be a companion program with Medicaid-funded Intermediate Care Facilities for individuals with intellectual disabilities (ICFs/IID). The waiver allows the state to “waive” some Medicaid requirements to provide services to people eligible for institutional settings (including ICFs/IID) who choose to be served in community settings as long as the costs do not exceed that of institutional care. These services are available in a variety of community settings, including group homes, supported living homes, one’s own or family’s home, specialized day programs, and specialized work programs.

Although there is a great deal of pressure by some government agencies and advocacy groups to eliminate programs that provide services in group or “congregate” settings, their availability should be based on the needs and preferences of the individuals involved and not on an ideology that dismisses these programs as unnecessary or harmful to people disabilities.

The establishment of ICFs/IID in the early 1980’s was a welcome reform to the scandalous conditions in many institutions at the time. For better or for worse, Michigan has eliminated public ICFs/IID, although some individuals continue to need the level of care that can only be provided in ICFs or skilled nursing facilities. The public, including families of people with the most severe and complex disabilities, are mostly unfamiliar with the terminology related to ICFs/IID. A better grasp of the definitions used in the ICF program can result in a better understanding of both the ICF program and Home and Community-Based Services, so that people with intellectual and developmental disabilities receive the services they are entitled to in the settings that work best for them.



Recently, I came across an “ICF/IID Glossary” on a Website at the Centers for Medicare and Medicaid Services (CMS) that defines the terms that often come up when considering services and living situations.

Here are some excepts from the glossary that define terms and eligibility for services and programs:

Intellectual Disability (AAIDD)(2013)** 


An individual is determined to have an intellectual disability based on the following three criteria: intellectual functioning level (IQ) is below 70-75; significant limitations exist in adaptive skill areas; and the condition is present from childhood (defined as age 18 or less).

Intermediate Care Facility for Individuals with Intellectual Disabilities (42 CFR 435.1009)

Institution for individuals with intellectual disabilities means an institution (or distinct part of an institution) that --

1. Is primarily for the diagnosis, treatment, or rehabilitation of the intellectually disabled or persons with related conditions; and

2. Provides, in a protected residential setting, ongoing evaluation, planning, 24-hour supervision, coordination, and integration of health or rehabilitative services to help each individual function at his greatest ability.

Institution (42 CFR 435.1009)

Institution means an establishment that furnishes (in single or multiple facilities) food, shelter, and some treatment or services to four or more persons unrelated to the proprietor.

[Note: an ICF/IID can be any setting from a small group home with four residents to a larger facility that serves many people in the same location. In Medicaid law an ICF/IID is considered an institution and is funded differently than community settings such as state licensed group homes and other programs. A distinguishing characteristic of an ICF/IID is that food, shelter (housing) and treatment services are included in the cost. In community settings, funding is fragmented and all the funding streams are often not taken into account when comparing costs. For example, with my sons who live in a group home, our community mental health agency funds services in the group home but my sons pay for room and board out of their Supplemental Security Income (SSI) from the federal Social Security Administration  and food is paid for separately. Cost comparisons between group homes and ICFs do not necessarily reflect these differences and end up exaggerating the costs of institutional care.]


Persons with related conditions (42 CFR 435.1009) 
[This defines who is eligible for an ICF/IID and therefore eligible for HCBS.]

Persons with related conditions relates to individuals who have a severe, chronic disability that meets all of the following conditions:

(a) it is attributable to, (1)cerebral palsy or epilepsy or (2) any other condition, other than mental illness, found to be closely related to intellectual disability because this condition results in impairment of general intellectual functioning or adaptive behavior similar to that of intellectually disabled and requires treatment or services similar to those required for these persons, (b) it is manifested before the person reaches the age of 22, (c) it is likely to continue indefinitely (d) results in substantial functional limitations in three or more of the following areas of major life activities: (1) self care; (2) understanding and use of language; (3) learning; (4) mobility; (5) self direction; (6) capacity for independent living.

Developmental Disability(P.L. 101-496)

A severe, chronic disability of a person 5 years of age or older which:

(a) Is attributable to a mental or physical impairment or is a combination of mental and physical impairments; (b) Is manifested before the person attains age twenty-two; (c) Results in substantial functional limitations in three or more of the following areas of major life activity: (I) self care;(ii) receptive and expressed language; (iii) learning; (iv) mobility; (v) self direction; (vi) capacity for independent living; and (vii) economic self sufficiency; and (e) reflects the person's need for a combination and sequence of special, interdisciplinary or generic care, treatment or other services which are lifelong or extended duration and are individually planned and coordinated; except that such term, when applied to infants and young children (meaning individuals from birth to age 5, inclusive),who have substantial developmental delay or specific congenital or acquired conditions with a high probability of resulting in developmental disabilities if services are not provided.


Active Treatment (42 CFR 483.440(a)) 
[This is one of the services that distinguish ICFs/IID from other programs, but these types of services are also available in the HCBS program as determined through the individual service plan.]

Refers to aggressive, consistent implementation of a program of specialized and generic training, treatment and health services. Active treatment does not include services to maintain generally independent clients who are able to function with little supervision or in the absence of a continuous active treatment program.

Components of Active Treatment:

A. Comprehensive Functional Assessment (CFR42 CFR 483.440(c)(3)). The individual's interdisciplinary team must produce accurate, comprehensive functional assessment data, within 30 days after admission, that identify all of the individual's:

• Specific developmental strengths, including individual preferences;

• Specific functional and adaptive social skills the individual needs to acquire;

• Presenting disabilities and when possible their causes; and

• Need for services without regard to their availability.

B. Individual Program Plan (IPP) (42 CFR 483.440(c)). The interdisciplinary team must prepare an IPP which includes opportunities for individual choice and self management and identifies: the discrete, measurable, criteria based objectives the individual is to achieve; and the specific individualized program of specialized and generic strategies, supports and techniques to be employed. The IPP must be directed toward the acquisition of the behaviors necessary for the individual to function with as much self-determination and independence as possible and the prevention or deceleration of regression or loss of current optimal functional status.

C. Program Implementation (42 CFR 483.440(d)). Each individual must receive a continuous active treatment program consisting of needed interventions and services in sufficient intensity and frequency to support the achievement of IPP objectives.

D. Program Documentation (42 CFR 483.440(e)). Accurate, systematic, behaviorally stated data about the individual's performance toward meeting the criteria stated in IPP objectives serves as the basis for necessary change and revision to the program.

E. Program Monitoring and Change (42 CFR 483.440(f). At least annually, the comprehensive functional assessment of each individual is reviewed by the interdisciplinary team for its relevancy and updated, as needed. The IPP is revised as appropriate.

Community Integration (The Council)*

Refers to arrangements that enable individuals to live, work, learn and play side by side in the community with people who do not have disabilities.

Assessment (The Council)*

Refers to the process of identifying an individual's specific strengths, developmental needs and need for services. This should include identification of the individual's present developmental level and health status and where possible, the cause of the disability; the expressed needs and desires of the individual and his or her family; and the environmental conditions that would facilitate or impede the individual's growth, development and performance.

The Glossary explains some of the references cited and goes into more detail about the ICF/IID program.

See also a 2014 article by Tamie Hopp, "People as Pendulums:  Institutions and People with Intellectual and Developmental Disabilities", on the history of deinstitutionalization of people with ID/DD, the predictable tragic consequences, and often willful misinterpretations of the 1999 Supreme Court Olmstead decision.