“It takes a village to raise a child.”  It’s a saying commonly used when talking about supporting a child who has disabilities.  Whether it’s before the child is even born, right after birth, or years later, when parents learn that there’s something “wrong” with their child, panic strikes.  A million questions go through their heads.  Getting that initial diagnosis and prognosis is often life-changing for the entire family.  After the shock wears off, it’s often realized that, although it’s probably different than originally planned, life goes on.  It’s realized that there are special people in the world to help guide you on this journey of life.  Many times, special relationships are formed and these amazing people are lifelong friends.  They may not be soccer coaches or dance moms you once dreamed of being friends with; instead, these people are therapists, paraprofessionals, and other families with special needs that have supported you along the way.

As I’ve explained in other entries, complications during birth caused brain damage resulting in my diagnosis of cerebral palsy.  Though I wasn’t officially diagnosed until I was three months old, because of the lack of oxygen I had at birth, my parents knew immediately I’d likely have some limitations.  At eight months old, I started physical therapy.  I went to a private therapy place in Oshkosh.  Because of the dynamics of this place, the physical therapist and some of her clients were able to form a special bond.  There were five or six of us around the same age with similar circumstances.  It was a pretty unique situation.  The families were able to help each other with different resources and things.  A couple of us were on United Cerebral Palsy (UCP) telethons together.  There was a speech therapist and occupational therapist in the facility that some of us saw.  I saw the physical therapist until I was over 16 years old.  We became like a big family.  We supported each other through life’s ups and downs.  Thanks to Facebook, many of us have reconnected and kept in touch.  It’s very neat to see where we all ended up.  Looking back, it’s amazing to see how far we’ve all come.  I recently met the physical therapist for dinner.  It was really fun to catch up and fill her in on what I’m doing.  It’s partly thanks to her, I am where I am today.

Another group of those special people are the therapists I had in school.  I’ve explained before that throughout my school years I had physical, occupational, and speech therapies.  The frequency of these therapies depended on my needs each year.  I had some great physical and speech therapists throughout the years.  I still occasionally keep in touch with some of them and they love hearing how well I’m doing.  I was also very fortunate to have the same occupational therapist from Early Childhood through my senior year of high school.  Again, she helped my family and I navigate through school system.  She was such an important key to my success.  In fact, when I do presentations or participate in board meetings, I often think of her because we worked for years and years with different assistive technology for my communication.  I have her on Facebook and sometimes I send her a message just saying “Hey I’m doing this and this—it’s because of all your help back in the day I’m able to do these things.”

Paraprofessionals are another group of a very special people in life.  Again, in past entries I’ve explained that thanks to the amazing paraprofessionals I had, I was able to succeed in regular education classes starting in kindergarten on.  These ladies helped me with whatever I physically needed to succeed in the regular class.  Everything from getting my jacket on and off, to feeding and toileting, to getting books out and taking notes, to setting up my computer or being my scribe for tests…  the list goes on and on.  I was truly blessed to have many outstanding paraprofessionals in my life.  Because they worked closely usually one-on-one with me every day at school, I became pretty close with most of them and keep in touch with them to this day.  I was incredibly blessed to have the same main assistant for eleven years.  Obviously, we became very close and remain close to this day.  We consider each other family.  We’ve become friends with each other’s extended families.  It’s definitely a very special relationship.  I think everybody in both of our lives know that we wouldn’t be the same people we are if we hadn’t met!  It was definitely meant to be!

There are many other special people in my life, but these relationships probably wouldn’t have happened if I didn’t have the unique circumstances I do.  Many people my age have friends from moms’ groups, friends from their kids’ activities, friends from a volleyball league or other activities.  While I’ll probably never friends from situations such as those, I’m incredibly fortunate to be friends with so many people who made such a profound impact on my life.  It really does take a village, and I’m truly blessed to have an outstanding village of people who continue to support me! 

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.

Assistive robots are growing in popularity.  They are being used to assist people with disabilities, the elderly, toddlers, and industrial workers perform physical tasks.  The aim of assistive robotics is to develop robotic aids for supporting people living independently and those who have degenerative limitations, such as elderly and people with disabilities.  The increase in funding worldwide for research on assistive robotics is expected to fuel the growth of the assistive robotics market during the forecast period.

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ACL has released a new Issue Brief on Assistive Technology. Assistive technology (AT) includes software, devices, equipment and products that improve the functioning of individuals of all ages with disabilities. Assistive technology can affect a person’s well-being by improving their ability to walk, eat, bathe, communicate, see, speak and live independently. Technologies also can help address social isolation and improve quality of life by assisting people with communication, mobility, and other daily activities.

This issue brief discusses:

1) the important role of assistive technology in helping people of all ages with disabilities live full and independent lives in their communities; and

2) certain sources of public funding for the technology, including Medicare, Medicaid, and programs that the Administration for Community Living (ACL) manages.  

View the Assistive Technology Issue Brief

The Wisconsin Family and Caregiver Support Alliance(WFACSA) is accepting nominations for our first ‘Thank You for Being A Friend’ award, honoring a notable individual, agency, employer who made a significant impact in a family caregiver’s day, week, year, or life!  Family caregivers can nominate a person, agency, employer of their choosing that has had a significant impact on them.  WFACSA will select one winner in each of the three following categories:

• Supportive Employer
• Supportive Agency
• Supportive Individual

As a family caregiver, do you have someone, whether it be a friend, neighbor, family member, doctor, nurse, care worker, or employer that has made a significant impact on your role as a caregiver?  Maybe someone finally asked how you are doing and whether or not you have the supports you need?  Maybe someone offered to care for your loved one so you could get some sleep and it meant the world to you?  The Wisconsin Family and Caregiver Support Alliance wants to recognize and honor those that support you, the family caregiver.  

To submit a nomination, please complete the form below by September 15, 2019. Nominations will be reviewed by the WFACSA Steering Committee based on the impact as identified by the family caregiver/nominator.  (The Conference Planning Committee reserves the right to present none or multiple awards in any of the categories.)

To submit a nomination, you can Click here to complete a Nomination Form online, or Click Here to download a hard copy to complete and email it back to us at wfacsa@gmail.com.

Deadline to submit a nomination is September 15, 2019. 

Winners will be recognized at the 2019 Self Determination Conference, October 15th at the Kalahari Resort and Conference Center in the Wisconsin Dells.

The Administration for Community Living is seeking input from stakeholders including academic and research universities, area agencies on aging (AAAs), State Units on Aging (SUAs), Aging and Disability Resource Centers, Centers on Independent Living, and non-profit organizations on assessing changes in cognitive health among homebound older adults. Cognitive health – which falls under the broad, umbrella term of brain health – refers to a person’s capacity to “remember, learn, plan, concentrate, and maintain a clear, active mind” [1]. Homebound older adults – when compared to non-homebound older adults – exhibit greater declines and may experience declines in cognitive health that can affect their quality of life and functional independence.

We are seeking input and responses to the following list of questions:

1. What are the characteristics of older adults for whom you conduct cognitive screening tests?
2. What screening test and/or (psychometric) instruments (e.g. tests of recall, attention, processing speed, etc.) does your organization use to measure cognitive health?
3. What is the length and format (e.g. in-person, paper-and-pencil, telephone, web-based, tablet, smartphone, etc.) used to administer these screening tests and/or instruments to the population of older adults you test?;
4. What is the frequency with which your organization administers these tests and/or instruments and the duration over which cognitive health is monitored?;
5. What is your estimate of the general cost per person for administering the test or instrument?
6. What happens when changes are detected in a person’s cognitive health and how is this information used?; and
7. What are the intended health outcomes (e.g., screening for a research study, early identification and detection, improvement through exposure to new interventions, reductions in re-hospitalization, etc.) sought from monitoring cognitive health over a period of time?

Purpose:

The purpose of this Request for Information (RFI) is to gain feedback and input on existing efforts to monitor status changes to cognitive health in the homebound older adult population from individuals or groups including – but not limited to – those in the academic and research communities, Area Agencies on Aging (AAAs), State Units on Aging (SUAs), Aging and Disability Resource Centers, Centers for Independent Living, and nonprofit organizations among others.

This RFI is for information and planning purposes only and should not be construed as a solicitation or as an obligation on the part of the federal government or the Administration for Community Living. ACL does not intend to make any awards based on response to this RFI or to otherwise pay for the preparation of any information submitted to or for the government’s use of such information.

Background:

According to cross-sectional data collected in 2011 by the National Health and Aging Trends Study, approximately 2 million (5.59 percent) of the older adult Medicare population were completely or mostly homebound [2]. A number of studies comparing the health profiles of homebound older adults – as compared to non-homebound older adults – consistently report that homebound older adults tend to be older in age, have multiple chronic conditions, and more frequently use healthcare services including emergency department visits [3].

Underscoring the potential importance of tracking cognitive health among the homebound older adult population is recent evidence finding that self-reported memory difficulties are a strong predictor of the homebound status of older adults [3] and evidence that screening tools and measures may prove useful in identifying those who may be experiencing cognitive decline or dementia despite not having a diagnosis [4].

What We Hope to Learn From this Invitation:

ACL is issuing this RFI to obtain input on existing efforts to monitor status changes in cognition in the homebound older adult population. This information will help ACL better understand what services, supports, and innovations are needed to inform interventions and/or policies to address declines in cognitive health that occur over time in the homebound older adult population.

References:

• https://www.nia.nih.gov/health/cognitive-health-and-older-adults" target="_blank" rel="noreferrer noopener">https://www.nia.nih.gov/health/cognitive-health-and-older-adults; https://brainhealth.nia.nih.gov/
• Ornstein, Katherine A et al. “Epidemiology of the Homebound Population in the United States.” JAMA internal medicine vol. 175,7 (2015): 1180-6.
• Musich, Shirley, et al. "Homebound older adults: Prevalence, characteristics, health care utilization and quality of care." Geriatric Nursing 36.6 (2015): 445-450.
• Setter, S., Neumiller, J., Weeks, D., Borson, S., Scanlan, J., & Sonnett, T. (2009). Screening for undiagnosed cognitive impairment in homebound older adults. The Consultant Pharmacist®, 24(4), 299-305.

Addresses:

Comments should be submitted electronically to Dr. Vijeth Iyengar (vijeth.iyengar@acl.hhs.gov) with “RFI-Cognitive Health Status Changes Homebound Older Adults” in the subject line.

For Further Information Contact

Dr. Vijeth Iyengar (vijeth.iyengar@acl.hhs.gov) with “RFI-Cognitive Health Status Changes Homebound Older Adults” in the subject line.

It would be helpful to this RFI and ACL if you could structure your response in the following way:

• Name of respondent
• Preferred contact email
• Organizational affiliation(s)
• Response to questions in the order they appear in the summary section of this RFI

Comment Due Date:

To be assured consideration, comments must be received by 5 pm EST on September 20, 2019.

Three U.S. Senators have introduced “The Exercise and Fitness For All Act” to improve access to fitness equipment and classes for people with disabilities.  The bill would promote the provision of exercise or fitness equipment, and exercise or fitness classes and instruction, that are accessible to individuals with disabilities.  It would have guidelines and regulations for fitness service providers specifying the accessible equipment and classes necessary to  ensure that people with disabilities can obtain the benefits  of physical activity and  fully participate in the services offered by the fitness provider.  

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The Department of Health Services has been granted an extension which pushes the Electronic Visit  Verification (EVV) implementation date back into 2020. The federal law would have gone into effect January 1, 2020, requiring all personal care and supportive home care workers to verify their time/location through an electronic system (smart phone, etc.).  

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For the third time this year, additional funding will keep alive a federal program that moves individuals with disabilities from institutions into the community.  Legislation signed this month allots another $122.5 million for Money Follows the Person which is a Medicaid program provides states with funding to pay for employment supports, housing and other services so that people with disabilities can transition from nursing homes and other institutional facilities to homes in the community.  The latest action will keep the program running through the end of this year, but advocates say it's operating at a  minimum level.

Read more

The U.S. Access Board has released for public comment advisory guidelines for wheelchairs used on commercial passenger aircraft during flight. These onboard wheelchairs are provided by air carriers as a means of facilitating the transfer of passengers with disabilities to aircraft lavatories since personal wheelchairs cannot be used in the cabin. The Department of Transportation (DOT) has expressed its intention to supplement its regulations under the Air Carrier Access Act (ACAA) to include performance standards for onboard wheelchairs on covered aircraft. The Board is developing these non-binding guidelines as technical assistance to air carriers and manufacturers of onboard wheelchairs by providing an example of how to meet DOT's planned performance standards.

As indicated in a https://www.federalregister.gov/documents/2019/08/20/2019-17873/advisory-guidelines-for-aircraft-onboard-wheelchairs">notice published in the Federal Register, the guidelines specify dimensions, features, and capabilities for onboard wheelchairs that will allow passengers with disabilities to be more safely and comfortably transported aboard airplanes in flight. In addition, the guidelines include criteria to allow the onboard wheelchair to fully enter the lavatory in a backward orientation and be positioned over a closed toilet, and for the lavatory door to be closed. This feature would afford those passengers who cannot independently transfer to the toilet to have privacy in performing non-toileting tasks related to personal hygiene or medical needs. The Board has posed a number of questions to the public about specific provisions in the guidelines but welcomes input on all portions of the document.

As part of a negotiated https://www.transportation.gov/sites/dot.gov/files/docs/ACCESS%20Committee%20Final%20Resolution.11.21.16.pdf">rulemaking to improve access for air travelers with disabilities, DOT has put forth plans to supplement its ACAA regulations and require onboard wheelchairs with enhanced functionality on aircraft with more than 125 passenger seats.

Related information, including instructions for submitting comments, is posted at https://www.regulations.gov/docket?D=ATBCB-2019-0002" target="_blank" rel="noreferrer noopener">www.regulations.gov (Docket ATBCB-2019-0002). Comments are due October 21, 2019. In addition, on September 12, 2019, the Board will hold a public hearing that will provide an opportunity to submit comments either in person or by phone. Further details will be posted on the Board's website at https://www.access-board.gov/onboard" target="_blank" rel="noreferrer noopener">www.access-board.gov/onboard. Those who wish to provide testimony at the hearing should contact Rose Marie Bunales at (202) 272-0006 (voice) or bunales@access-board.gov by September 5, 2019.

For further details on the guidelines or the public hearing, contact Wendy Marshall at (202) 272-0043 (voice) or marshall@access-board.gov, or Mario Damiani at (202) 272-0050 (voice) or damiani@access-board.gov.

Public Hearing on Advisory Guidelines for Aircraft Onboard Wheelchairs  
September 12, 2019, 9:30 - 4:00 (ET)
Remote attendance options will be posted at: https://www.access-board.gov/onboard" target="_blank" rel="noreferrer noopener">www.access-board.gov/onboard
Access Board Conference Center 
1331 F Street, NW, Suite 800
Washington, D.C. 

 Self-Determination Network News:

August 2019

Connect | Share | Learn | http://sdnetworkwi.org/  

Register Today!

The 2019 Self-Determination Conference will take place October 14th-16th at the Kalahari Resort in Wisconsin Dells.  The Conference empowers people with disabilities in Wisconsin to have more control over their lives. Technology is constantly evolving and so is the Self-Determination Conference. Join us as we learn ways to live healthier, happier and more productive lives.  Registration closes September 27th.  Register today!

Diehard Award Nominations

Do you know someone who goes above and beyond to improve community supports for individuals with disabilities?  Do they support self-determination?  Nominate them for a Diehard Award!  A Diehard is an individual who has made a significant contribution to the advocacy work here in Wisconsin. A diehard is someone with a steadfast commitment to the principles of community integration and self-determination. Diehards go above and beyond to make sure everyone is counted.  Nominations are due by 12p.m. on September 5th.  Nominate someone today!

“Scotland Reports” from Lynn Breedlove

In early August, Lynn Breedlove represented In Control Wisconsin at an International Disability Congress in Glasgow, Scotland. He presented highlights of his paper entitled “Self-Direction Worldwide: Contrasting Beliefs and Their Impact on Practice” and attended several workshops focused on self-direction. He was the U.S. representative in a half-day brainstorm with self-direction advocates from 9 countries focused on the current state of self-direction around the world.  He is writing a series of articles for the SD Network about what he learned.  Today, we are pleased to share the first in his series.  Join the conversation: Please share comments, and thoughts with one another using the network. 

Read Scotland Report #1

Read a summary of “Self-Direction Worldwide”, with a link to the full paper

The Self-Determination Network includes some very talented members and we want to help you to get to know each other a little better. Member Spotlight is a great way for us to get to know each other better.

For August, we shine the spotlight on Lydia. This college senior is determined not to let anything stop her from achieving her goals!  She believes it’s so important to advocate and show the world what people with disabilities can do. Stop by this month's Member Spotlight to get to know Lydia.

Stacy’s Journal

"The events of the last month have been a whirlwind. I find myself trying to find a sweet spot between wanting to do all I can to advocate for people with all disabilities, but yet wanting to be as socially “normal” as I can. At times, it’s challenging to find the right balance, but I wouldn’t trade either for the world."

In this month's entry, Stacy talks about trying to balance being a strong advocate and wanting to lead a "normal" life as possible.  We encourage you to share your thoughts and experiences as well.

Take five minutes to check out what's happening on the Self-Determination Network:

• Family Caregiver Characteristics: The Administration for Community Living released a data profile using data from the Caregiver Outcome Evaluation Study of the National Family Caregiver Support Program which examines characteristics of caregivers including age, relationship to care recipient, level of caregiving intensity, and use of NFCSP services.  Find out what the study found.
• State Budget Impact:  The state budget passed by the legislature and approved by the Governor will fund state programs for the next two years. Read the Survival Coalition's summary.
• Inclusive Emojis: An updated collection of emojis intended to be more inclusive and diverse was released.  Learn what new things are included.
• Housing Assistance Funding: Federal officials announced that they plan to set aside millions of dollars to help people with disabilities access housing in the community. Find out what the funding Will help with.
• Accessible Homes:  For people with disabilities, house  hunting can be very frustrating. Read about the push to make all homes more accessible.
• Employment First Partner Grants:  The Wisconsin Board for People with Developmental Disabilities is seeking up to eight organizations to engage in community outreach activities that lead to increased community, integrated employment for people with intellectual and developmental disabilities. Applications are due August 30th.
• Self-Advocate Leaders Needed:  People First Wisconsin is seeking applications from eight people with intellectual/developmental disabilities to become Self-Advocate Leaders for the Wisconsin Board for People with Developmental Disabilities’ Model Approaches to Living Well grant project. Learn more and apply today! 
• Partners in Policymaking:  Wisconsin Partners in Policymaking is a six‐session advocacy and systems change training program designed to develop a group of future leaders across the state who are able to work with legislators and communities on policies and initiatives that will support the full participation and inclusion of people with developmental disabilities in all aspects of life. Applications for Fall are due September 1st.
• New MCOs for Family Care: The Wisconsin Department of Health Services recently announced New managed care organizations (MCOs) have been selected to provide the Family Care program in some counties in Wisconsin beginning next year.  Learn about the change.
• PIP and YiPPE Trainings: Transition Parents in Partnership (PIP) and Youth in Partnership with Parents for Empowerment (YiPPE) Trainings for 2020-2021 are now open for registration. Find out more about these great programs and register today! 

Upcoming Events

Here's a sample of upcoming events listed on the Self-Determination Network:

• The Organizer’s Forum:  August 20th, 12p.m. to 1p.m., Online
• Webinar: Insights On Traveling With A Mobility Disability:  August 20th, 1p.m. to 2:30p.m., Online
• Adaptive Waterskiing:  August 21st, 10a.m. to 3p.m., Lauderdale Landing, Elkhorn WI
• Webinar: Self-Direction For Dually Eligible Individuals Utilizing Long-Term Services And Supports (LTSS):  August 21st, 11a.m. to 12:30p.m., Online  
• At The Lake:  August 23rd & 24th, Camp Whitcomb, Hartland WI
• Adaptive Sportsmen Family Picnic & Shoot:  August 24th, 10a.m. to 3p.m., Schultz's Gun Club, Muskego WI
• Transportation Consumer Advocacy Team (TCAT): August 27th, 1p.m. to 3p.m., IndependenceFirst, Milwaukee WI
• Caregiver Summit:  September 5th, 9:30a.m. to 3:30p.m., Department of Health Services, Madison WI
• Webinar: Disability-Competent Care Conversation On Care Coordination With Independence Care System (ICS):  September 5th, 1p.m. to 1:30p.m., Online
• Webinar: Web Accessibility:  September 5th, 1:30p.m. to 3p.m., Online
• Long Term Care Advocacy Team:  September 10th, 2:30p.m. to 3:30p.m., IndependenceFirst, Milwaukee WI
• Abilities Travel Club:  September 11th, 11:30a.m to 12:30p.m., Carroll University, Waukesha WI
• Community Resource Network :  September 11th, 11:30a.m. to 12:30p.m., AbilityNow, Waukesha WI
• Supported Decision-Making And Other Alternatives To Guardianship Training:  September 13th, 10a.m. to 4p.m., Kalahari Resort, Wisconsin Dells WI
• Laugh Comedy Hour:  September 14th, 3p.m. to 4:45p.m., ComedySportz, Milwaukee WI
• Transportation Consumer Advocacy Team (TCAT):  September 24th, 1p.m. to 3p.m., IndependenceFirst, Milwaukee WI
• Autumn Ability Fest:  September 29th, 7a.m. to 7p.m., Camelot Golf Club, Lomira WI
• 1st Annual HOPE And WISDOM Fundraiser:  September 29th, 10a.m. to 3p.m., Camelot Golf Club, Lomira WI 

Post your event on the Self-Determination Network and it can be included in future Network News emails to members! Questions? Suggestions?  Contact Stacy Ellingen. 

The Self-Determination Network is powered by InControl Wisconsin and supported financially by our members and Sponsors. We couldn't keep this Network going with you!  Find out how you can help support the Network.