Michigan: Governor Whitmer proposes $5,000 tax credit for caregivers

The Detroit Free Press reported today on a proposal by Governor Whitmer to provide tax relief to caregivers. 

According to the article, “Whitmer's Michigan caregiver tax credit proposal could provide up to $5,000 in tax relief” by Clara Hendrickson, 1/21/24, the plan would “provide up to $5,000 in tax relief for thousands of Michigan families, covering expenses such as counseling, transportation and nursing or respite services. Whitmer's office said the proposal will allow more seniors in Michigan to age where they live and help parents caring for children with long-term needs.”

According to a 2021 AARP study “…unpaid family caregivers spend an average of $7,242 annually. The advocacy group places the economic value of their contributions supporting the adults in their lives at an estimated $600 billion.”

The “Caring for MI Family Tax Credit" would cover expenses such as counseling, transportation and nursing or respite services to alleviate financial stress on families caring for seniors and parents caring for children with long-term needs.

2015 VOR Annual Conference Featured Speakers: Terry Farmer and Lois Sheaffer

VOR is a national organization that supports individuals with intellectual disabilities (IDD) and their families by advocating for a full range of residential and service options to meet their diverse needs. VOR will be holding its Annual Conference on Sunday, June 7, 2015 in Washington, D.C. See you there!
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(from the VOR Weekly Update)

Terry R. Farmer

Terry R. Farmer, the CEO of ACCSESS, a national organization representing “more than 1,200 disability service providers across the country as the Voice of Disability Service Providers,” will be a featured speaker at VOR’s Annual Conference on Sunday, June 7, 2015 in Washington, D.C.

Terry will speak on “National Disability Policy – Initiatives Impacting Employment Options for Individuals with Significant Disabilities.”

Emerging public policy is affecting the delivery of services and supports currently available to individuals with significant disabilities.  Federal and state programs and community providers are transforming their systems and operations in response to new laws, regulations and administrative actions.  Conference participants will learn how these forces are affecting employment programs for individuals with significant disabilities, and discuss strategies for engaging policy makers in a rapidly changing environment.

About Terry: Throughout his career, Terry has been affiliated with several state and national professional and trade organizations and has been recognized for his academic work and service to the field. His work experience includes direct service provision, behavior analysis (State of Florida Certified), program administration, policy analysis and executive level leadership in the fields of disabilities and human services.  He has administered programs of long-term services and supports, diagnosis and evaluation, community placement of people with severe developmental disabilities and mental illness, and issue advocacy. From 1991-2008, Terry served as the President/CEO of the Florida Association of Rehabilitation Facilities. In 2009, he co-founded Combat Injuries Project, Inc. with a group of veterans, professionals and business executives to serve veterans, especially those with service-connected disabilities, and their families.  He was appointed ACCSES CEO in April, 2011. 

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Lois Sheaffer

Lois Sheaffer will be presenting “Everyone Needs a little REST!” at VOR’s 2015 Annual Conference on Sunday, June 7, 2015 in Washington, D.C.
 
Ms. Sheaffer is the Founder, National Director and Master Trainer of Respite Education & Support Tools (REST). She also serves as the Director of Government Relations and Community Support for Marklund, a Medicaid Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID) in Illinois.
 
REST is a nationally-recognized train-the-trainer program that equips volunteers with the skills needed to support caregivers in their community through respite.
 
Ms. Sheaffer, a Certified Therapeutic Recreation Specialist, began her career in respite working with individuals who have special needs. As the coordinator of an in-home community respite program she hired, trained, and matched workers with families. She later became active in the Illinois Respite Coalition and served as President of the Coalition for five years. She continues to stay well connected with ARCH [Access to Respite Care and Help] and the National Respite Coalition.
 
Most recently, using the national respite guidelines, she developed REST, a respite training program for volunteers. 

In addition, Ms. Sheaffer, has worked in a variety of settings, including geriatrics, skilled care, and pediatric residential facilities for children and adults with Developmental Disabilities. Lois is a registered lobbyist and currently serves as the Director of Government Relations and Community Support for Marklund.
 
Please plan to attend VOR's Annual Conference and hear Ms. Sheaffer's presentation. Won't you join us? Registration is now open.
 
For complete conference details and a registration form, visit VOR’s Events link on our website.

Ann Arbor paper recognizes a local hero

This is from Ann Arbor Family, a free local advertising paper that features stories about people and events in the Ann Arbor area. Stephanie is one of my own personal local heroes from Just Us Club, a non-profit organization that provides after school care, an adult activity program, and respite care  for  children and adults with moderate to severe disabilities.

 Special needs Helping Heroes by Nan Bauer:

Stephanie Swain 
Program Director for the Just Us Club

Coming from an Ypsilanti family of 11 kids, Stephanie Swain realized early on that she had a heart for childcare. A Special Ed teacher by day at the High Point School in Ann Arbor, Stephanie’s the program director for the Just Us Club, an after school option open to any students with disabilities who can function in a group setting. “We have a huge range of kids here: cerebral palsy, muscular dystrophy, Down syndrome, autism spectrum,” she says. “We have a pretty unstructured program, because the kids want to relax after a day at school, so we play games, do art, and we have music therapy once a week.” She also offers respite care, giving parents some precious free time while she hangs out with the kids. Even with her jam-packed schedule, she’s found time to continue her education and is on the verge of receiving her master’s degree and gearing up for a PhD. “I’m super passionate about helping parents understand their kids’ behaviors,” she says. “If I can help alleviate some of the anxiety that parents can feel when their child has a meltdown or just acts up in an extreme way, the environment gets better for the whole family.”

Learn more about the  Just Us Club at justusclub.org/contacts.html

Supporting Families Part 1: Families of people with DD need help, but will they ever get the help they need?

I read reports, so you don't have to and this one is a doozy: "Building a National Agenda for Supporting Families with a Member with Intellectual and Developmental Disabilities". 

The Supporting Families report came out of a conference held in March 2011 in Racine, Wisconsin.  The conference was sponsored by the federal Administration on Developmental Disabilities (ADD)  [now called the Administration on Intellectual and Developmental Disabilities (AIDD)]. Almost all the participants (see page 24 of the report) were professional advocates from programs and advocacy organizations funded, at least in part, by the federal Developmental Disabilities Act and administered by the ADD. Many of the participants are also identified as parents of children or adults with DD, but they  attended the conference as representatives of their programs or organizations.

Like many ideas coming from advocacy groups for people with developmental disabilities, the idea of Supporting Families is a good one. When one looks deeper, however, and considers the report's recommendations and how they might be applied in the real world, "Supporting Families" proves to be, at best, lacking in common sense and, at worst, potentially harmful to the people the participating advocates claim to want to help.

The Supporting Families report establishes that families do, indeed, need help:

(from Page 4) "Today there are more than 4.7 million citizens with intellectual and developmental disabilities in the United States. More than 75% of those living in their communities without formal disability services and relying on their families for varying levels of support. [emphasis added] Of the 25% receiving services, over 56% live with their families; in some states, the figure is as high as 80%. For many families, the support provided neither is short term nor does it end when the family member turns eighteen years old".

(from Page 5) "Families often are faced with emotional, social, physical and economic demands that they may not have experienced had their child not been diagnosed with a disability. 

• Twenty-eight percent of children with disabilities live below federal poverty levels as compared with 16% of children without disabilities.
• Parents of children with disabilities have lower rates of, and diminished opportunities for, employment and advancement than parents of children without disabilities.
• Over 58% of parents/caregivers spend more than 40 hours per week providing support for their loved one with I/DD beyond typical care. 40% spend more than 80 hours a week. [emphasis added]
• Long waiting lists for services and the increased lifespan of individuals withI/DD have contributed to a growing number of individuals with I/DD  households where the primary caregivers are themselves aging."

Several things bear repeating before going on: 75% of people with DD receive no "formal" (read paid) services. 58% of family caregivers spend more than 40 hours per week, the equivalent of a full time job, caring for their family member and 40% spend more than 80 hours, the equivalent of two full-time jobs, caring for their family member.

As a parent who cared for one or the other or both of my two sons with severe intellectual and developmental disabilities at home for 28 years, I know enough about the difficulties that families face to know that the report and its recommendations coming out of the conference on Supporting Families is not the report I would have written. There is useful information to be extracted from from the report, however, and it reveals a great deal about how policy becomes twisted to serve interests other than those of people with disabilities.

Given the set of facts about families presented in the report, it appears to me that the first step in easing the burden placed on families by an inadequate system of care and services would be to increase services available and appropriate to the individual with DD.  In addition, respite services that give families a break from care giving could be combined with expanded recreational and social activities for the DD family member giving the person with DD a much needed opportunity to have a life outside of the family home. Competent paid caregivers that come into the home to relieve families of constant care are also needed for both the family and the person with DD. These types of services go a long way toward keeping families together and reducing costs over the long term by delaying the need for residential placement outside the family home.

There are always situations where it is better for the welfare of the individual with DD and the family to have the option for the person with DD to reside outside the family home in a safe setting that provides services appropriate to the needs of the individual. We need to be especially cognizant, however, of people with DD who do not have families or whose aging parents no longer have the energy, ability, or will to care for another adult. We need to make sure that these individuals have the same rights and protections from harm that are are afforded people who are fortunate enough to have close and engaged family and friends who know and care what happens to them.  It is often the case that people with DD with close connections to family and friends have their rights upheld and respected because a devoted family member or friend fought for them.

It is likely that providing appropriate services to the person with DD and expanding direct services to families such as respite care combined other activities for the person with DD may require an increase in funding from federal and state governments, but perhaps not as much as some policy makers fear. Families who have cared for loved ones with DD into their adult years are realistic about the effort and time that goes into caring for a person with severe disabilities and are least likely to squander resources on frivolous expenditures. In my experience, when families get together to fill  gaps in the system of services that are lacking in their communities, they are extremely resourceful and marshal community resources that local service agencies are not able to do alone. Of course this means listening to families, respecting their expertise, and allowing them to do what they do best, which is acting as check on a dysfunctional system of services to make it work better for their DD family members.

That's my two cents. There's not much new or original here. It just makes sense in helping both people with developmental disabilities and their families to make the dysfunctional system of care and services work better. Now, what is it exactly that the advocates participating in the Supporting Families conference would do or not do to help families?

One thing is clear. The Supporting Families advocates are not about to stick their necks out and push for any increases in funding to directly provide services to families or to people with DD living at home. With the big push toward deinstitutionalization, which DD Act programs have supported wholeheartedly, the report acknowledges that as supports have shifted to community settings, (page 5) "the demand for long-term supports continues to increase and funding continues to be severely limited. This is further enhanced as the aging of the baby boom generation brings with it an increased need for public resources… These pressures, combined with a weak economy and large federal budget deficits require that developmental disability service systems transform the way they provide services and support. These changes include first recognizing the key role of the family as a primary [and mostly unpaid] source of support and for naming the source of day to day caregiving, and, second, supporting the capacity of the family members to provide needed assistance when necessary over time. Supports to the family unit must be a fundamental consideration in budgetary and long-term care policy as our nation moves forward."

The Supporting Families crew has opted to accept rather than challenge the idea that national economic conditions will inevitably result in fewer services and options for people with DD and their families and that families might as well get used to doing more with less. Where the Supporting Families advocates are willing to help is in supporting the capacity of families to do more with less.

stay tuned for more...

Washington State Hearings on Respite Care 2/14/13

These are clips from hearings in the Washington State House Early Learning & Human Services Committee. The parents testifying have gone without services for their severely disabled children for years.

Washington State: Respite Care for the "No Paid Services" Caseload

Because We Care - Beyond Inclusion is a Washington State blog that advocates for a full continuum of care for people with intellectual disabilities and their families. 

Because We Care supports HB 1546, a bill before the Washington State legislature that would address some of the needs of 16,000 plus developmentally disabled clients who are eligible for services but do not receive any. They are called the "no paid services" case load. 

Among other things, the bill would make available funding to provide respite services for 4,000 people for the fiscal years 2014 and 2015. 

Many families who already have respite funding have difficulty finding providers who are reliable, competent, and willing to work for low pay. This blog post urges the DD system in Washington State to look beyond in-home care and consider the possibility of using specialized programs for people with DD already in place in schools, recreation departments, county park systems, and other center-based programs:

"By utilizing a center based respite we could pay the providers more than minimum wage which would add to provider stability,  have transportation to and/or from school for after school respite, provide respite right in the community, provide meaningful activities, have staff support (thereby not relying on one person to show up at your house – we have all experienced the unreliability of this situation which only adds to the family’s stress) and there are more eyes on everyone to help with prevention of negligent care."

This sounds good to me, but it is bucking the trend pushed by full inclusion advocates to eliminate disability-only services. The blog post has an answer for that: "Without respite our families are becoming socially excluded – isolated from community.  This is not what the inclusion movement was intended to do but it has become the reality for many families."

"Undersung": Documentary on caregivers of disabled family members

 From the Undersung Web site:

"MacArthur Fellow and poet Heather McHugh, together with filmmaker Adam Larsen, are collaborating to create UNDERSUNG, a feature-length documentary celebrating and giving voice to one of the most under-sung of human communities: long-term full-time caregivers of disabled family members."

Here is the trailer for the documentary project:

Parents Night Out Video

Washtenaw County, MI: Parents Night Out!

From the Web site of the St. Luke's special needs ministry of Ann Arbor, MI:

Parents Night Out is a respite program for parents who have children with special needs.  This program is offered from 6-9 p.m. on the first Friday of every month from October-June at St. Luke Lutheran Church-Ann Arbor, MI.  Parents can enjoy a break while leaving their children in the care of responsible volunteers. This program is FREE and open to anyone who has a need. Children enjoy activities such as open gym play, crafts, music, and a movie.  Snack time is also provided.  We have no restrictions on age of children or ability level.  Siblings are also welcomed and encouraged to come.  Registration and an R.S.V.P. is required for each evening.  Space is limited to the first 25 children signed up.  

For more information, see the Web site. Watch the beautiful video from the Parents Night Out Program. So many familiar faces.

Comment #5 on CMS proposed regs (CMS-2296-P): limiting access to services and preventing appropriate care

ISSUE #5: The proposed regulations to "prevent the provision of unnecessary or inappropriate care" will do the opposite: limit access to needed services and prevent care that is determined to be appropriate by the individual and people who are familiar with his or her needs.
 
CMS proposes to limit HCBS waiver services only to settings that are "integrated in the community, provide meaningful access to the community and community activities, and choice about providers, individuals with whom to interact, and daily life activities..."  Other comments criticize settings that do not allow individuals “to choose whether or with whom they share a room, limit individuals’ freedom of choice on daily living experiences such as meals, visitors, activities, and limit individuals’ opportunities to pursue community activities.”

Any form of congregate living, even living with one’s own family, will inevitably have rules affecting an individual’s daily life activities and freedom of choice. There may also be restrictions on “daily life activities” to protect the person and others from harm (i.e. not allowing someone to run out in traffic and get hit by a car but instead providing a fenced in yard where the person can move about without being injured). To eliminate options that have rules and restrictions because some people would find those rules and restrictions incompatible with their own needs and desires is foolish.  

The person-centered planning meeting should be the place where the individual’s needs and preferences are matched with compatible and appropriate services and living arrangements and where modifications to existing settings and acceptable compromises are determined. Maintaining a full continuum of services and settings is a better plan than eliminating options because some people might find them objectionable.

The proposal states that a setting is not integrated in the community if it is…"Located in a building that is also a publicly or privately operated facility that provides inpatient institutional treatment or custodial care; in a building on the grounds of, or immediately adjacent to, a public institution; or a housing complex designed expressly around an individual's diagnosis or disability, as determined by the Secretary; or…Has qualities of an institutional setting, as determined by the Secretary..."

These proposals appear to eliminate HCBS funding for many forms of congregate care for people with disabilities or for any specialized services provided in group settings and designed for people with specific disabilities. It appears that CMS has come to the conclusion that the worst thing that could happen to people with disabilities is that they would have to associate with people like themselves. 

Here are just a few of the programs and services that could no longer be provided with HCBS waiver funding:
 
ICF/MR community resource programs that offer medical, dental, respite, and recreational services to people living in surrounding communities…Harbor House Ministries in Ottawa County, Michigan, that serves people with the most severe disabilities in three 12-bed group homes designed and planned by parents and caregivers with support from a variety of community organizations – care and support includes both specialized services along with appropriate community involvement for each resident… Just Us Club in Ann Arbor, Michigan, a parent-directed afterschool program for students and an activity/respite program for adults, all with moderate to severe developmental disabilities - it is the most popular respite program in the county and provides care for adults for about $6.00 per hour (about half the cost of paying a respite worker to come into one’s own home); a group home in Grand Rapids, Michigan, for high-functioning adult men with autism built on the grounds of a retirement community – each resident has his own bedroom and bath, living independently but together in a supportive environment…a local nursing home that provides overnight respite care for a severely brain-injured man who lives with his family….planned communities in Florida modeled on retirement communities, developed by families who are responding to the waiting list of about 20,000 people with developmental disabilities who receive no services…Wheelchair basketball for people with spinal cord injuries…Group homes designed for people with specific medical problems to help manage the medical condition while providing services for as normal a life as possible…The Community Respite Center in Jackson, Michigan, that provides respite care and activity programs for children and adults at a Medicaid nursing facility -- guests can be accommodated at any level of nursing skill including feeding tubes, medications, and breathing and suctioning treatments…

While there are hundreds of thousands of people with disabilities on waiting lists for services across the country, there is no shortage of ideas for improving the lives of people with developmental disabilities. When CMS deliberately and unnecessarily narrows the choice of options available based on a misinterpretation of law and a questionable ideology, it becomes an impediment to creating a system that can truly meet the needs of the full range of people with developmental disabilities, especially for those who are either not served at all or inadequately served by our current system.

Free respite evenings in Washtenaw County

On the first Friday of every month from 6 p.m to 9 p.m., responsible volunteers provide parents of special needs children a break at St. Luke Lutheran Church in Ann Arbor.

The Special Needs Ministry of St. Luke Lutheran Church sponsors respite care with enjoyable activities, snacks, music, and fun in a safe environment for children with special needs. Siblings are welcome! The program is open to all ages.

Registration providing information about the child and family is required. An R.S.V.P. is required no later than the Tuesday before the Friday respite care evening. There are spaces for 25 children. A waiting list is maintained in case there are cancellations.

The next respite evenings will be on November 5th and December 3rd, 2010.

For more information contact:

Pam Kamrath at 734.474.0573 or pkmrath@comcast.net
St. Luke Lutheran Church
4205 Washtenaw Ave.
Ann Arbor

We're not in Kansas anymore!

We have returned from a 3,000 mile road trip to Colorado and back. Before the trip, I had many second and third thoughts about leaving the boys in their group home, the grandparents in their advanced state of age, and the dog and two cats at the mercy of relatives who agreed to live in our house for a week and watch over the whole mess.

It all turned out OK. The dog Lucy was especially happy to have two young kids at her beck and call who had the energy to take her for walks every day.

Disabled Children and the Invisible Fence

In an article that appeared in Sunday's AnnArbor.com (3/28/10), Annie Zirkel has hit the nail on the head:

"Raising a child with disabilities is like living in a yard with an invisible fence."

The fence expands and contracts, sometimes fencing in your other children whom you hoped might escape some of the limitations of life with disabilities and sometimes expanding into new possibilities that make life seem a little brighter and less claustrophobic for everyone concerned.

As Annie says, envy of people not confined by the invisible fence occasionally rears its ugly head. Many years ago, I remember going to a party at my daughter's middle school a few weeks before the winter break at the end of February. I was eavesdropping on a conversation between two mothers, one of whom was trying to decide whether her family should go skiing in Colorado or spend the week in a friend's condo in the Bahamas. Oh, please!

My plan was to take every measure necessary to preserve my sanity during the dreaded "vacation". That meant loading the boys into the van for their daily activity, an hour's ride through the countryside with music playing. This we called "airing out the boys" and it had become a ritual for maintaining happiness for them and sanity for us parents on weekends. I also hoped for a few hours of respite care from our wonderful and experienced sitter, but that depended on whether the other families who relied on her had gotten to her first. As for my daughter, I hoped she would have lots of invitations to visit friends. It was much easier to do fun things with her when the boys were in school and she was not.

I avoided most, but not all, of the activities for parents at "regular" school, because I could not get over how well put together and rested parents of "regular" children look. The contrast to my harried and sleep deprived friends from the "irregular" school was too painful and distracting. And, yes, I know that other people have awful things to deal with that don't always show on their faces or in their choice of wardrobe, but I still did not fit in.

Nevertheless, Annie has some wise words for people like me:

"I imagine I will always struggle with the challenges of this invisible fence. But I do take care not to spend too much time envying other's grass because it doesn't make mine grow any better. The best I can do is try to make our yard nicer, keep the edges from closing in, and work to appreciate our rare opportunities — no matter how brief or imperfect — for a change of scenery."

Annie Zirkel, LPC is an Ann Arbor parenting consultant and past editor of “A Different Path,” a Washtenaw newsletter for families raising children with special needs. You can find her at www.practicehow.com or contact annie@practicehow.com .

Respite House for youth with behavioral problems and developmental disabilities

From the Democrat and Chronicle, Rochester, N.Y.

In Rochester, NY, a respite house is being built for young people 11-21 years old with behavioral and developmental disabilities. The adolescents would spend one week every two months at the respite house under the 24-hour care of house managers, nurses, behavioral therapists and other workers. They would practice social skills and daily habits during their stays, while their parents and siblings get some time off from the stresses of life with a disabled family member.

The Mary Cariola Children's Center will rotate eight groups of six young residents through the house. The respite program will be free to families.

Respite evenings in Chelsea, MI

The Chelsea Free Methodist Church is offering families of special needs children one respite evening per month for free. The program, called Rest and Refresh, is open to families of children with physical, emotional, or mental disabilities. Siblings may also attend.

One Saturday night per month, the church, which is located at 7665 Werkner Road in Chelsea, MI, will offer respite from 5-9 p.m. Volunteer care givers will be selected based on the child's needs. All volunteers are required to submit to a background check and will go through an orientation for the program.

A family orientation night will be held on Saturday, February 23, 2008 from 5-9 p.m. at the church. The first respite care evening will be on Saturday, March 8, 2008.

For questions about the program, call Liz Graves, Rest and Refresh Coordinator, at (734) 475-8801. For an application, call (734) 475-1391 or email info@chelseafmc.com.