National Alzheimer's Project Act: Public Comments on Advisory Council Meeting, August 2016

• T. Buckley  |  07-27-2016
• M. Ellenbogen  |  07-27-2016
• M. Hogan  |  07-27-2016
• M. Janicki  |  01-19-2016
• I. Kremer  |  08-08-2016
• J. Lyons  |  07-29-2016
• A. York  |  07-27-2016

Thank you to the Advisory Council for its powerful recommendations and to all those at the U.S. Department of Health and Human Services whose work is reflected in the draft 2016 National Plan Update -- both its extensive list of accomplishments and its vision for tangible progress. It is particularly gratifying to see prioritization of timely detection and diagnosis and greater access to services to improve quality of life for all those affected by such conditions. We see this is the Advisory Council's support for clinicians adopting the Gerontological Society of America's "KAER" process, ACL and other agencies helping states and local communities to become dementia friendly, CMS proposing "a G-code that would provide separate payment to recognize the work of a physician (or other appropriate billing practitioner) in assessing and creating a care plan for beneficiaries with cognitive impairment," and in the Advisory Council's deep engagement in delivering a National Research Summit on Care and Services for Persons with Dementia, Family Members, and Caregivers.

Thanks also are extended to the National Institutes of Health for its FY 2018 professional judgment budget (https://www.nia.nih.gov/alzheimers/publication/stopping-alzheimers-disease-and-related-dementias) describing both its estimate of new funds needed to fully pursue scientific opportunities in accordance with the National Plan and how such funds would be applied. Many of us recognize the challenges in NIH proposing an FY 2018 budget before the FY 2017 appropriations are finalized and would like to see some adjustment in the sequence. But we are hopeful that -- as occurred with the last cycle -- Congress will provide sufficient FY 2017 increases in dementia research funding to allow NIH to accelerate its proposed FY 2018 projects into its 2017 work plan. Appropriately, NIH is proposing significantly increased investments across all major categories of its dementia research portfolio. It is particularly noteworthy that NIH proposes to nearly triple the amount of new funds dedicated to research on care and caregiver support from $9.8 million in the FY 2017 professional judgment budget to $28 million in the FY 2018 professional judgment budget.

Last but not least, I offer congratulations to all those who made possible the 2017 Alzheimer's Association International Conference. Each year, AAIC is a crown jewel in advancing both science and the understanding of science by the broader public. This year was no exception. We look forward to a time when science liberates us all from the shadows of dementia.

NOTE: The LEAD Coalition is a diverse and growing national coalition of 89 member organizations [http://www.leadcoalition.org/who-we-are/our-members/] including patient advocacy and voluntary health non-profits, philanthropies and foundations, trade and professional associations, academic research and clinical institutions, home and residential care providers, and biotechnology and pharmaceutical companies. The LEAD Coalition is co-convened by USAgainstAlzheimer's and Volunteers of America. The coalition works collaboratively to focus the nation's strategic attention on Alzheimer's disease and related dementias and to accelerate transformational progress in: detection and diagnosis; care and support to enrich quality of life; and research leading to prevention, effective treatment and eventual cure. For more information about the LEAD Coalition, please contact me.

My name is Jodi Lyons, and I am an author and care consultant who helps older adults find the care they need throughout the country. Most of my clients have some form of dementia. Many have behavioral issues that make it difficult for them to remain safely at home and difficult for them and their families to find an appropriate care setting.

I urge the Council to continue to support people with dementia and their caregivers while we search for a cure. I understand the challenges posed by limited resources and the need for increased funding for research in order to find a cure. At the same time, people are suffering now and care is expensive -- both in direct care costs and in the costs of caregivers leaving the workforce or reducing hours in order to be a caregiver.

That economic reality means that the public and private sectors need to work together to create wrap-around solutions for people with cognitive issues and their families. To that end, I propose that the Advisory Council work to:

1. Establish additional public/private sector partnerships to develop practical, implementable plans and solutions for people with dementia and their caregivers. This includes addressing medical, financial, legal, practical, family/caregiver, and housing needs.
2. Continue to identify and work with industry experts and thought leaders in care coordination.
3. Create an educated consumer base through developing and disseminating accurate and culturally sensitive materials.
4. Identify and partner with programs to keep caregivers healthy -- including cognitive and emotional health.

I would be pleased to provide additional information.

Thank you once again for giving the Eldercare Workforce Alliance, a coalition of 31 national organizations committed to addressing the immediate and future eldercare workforce crisis, the opportunity to offer comments. Because we believe that access to quality health care for older adults with cognitive impairment is vital to healthy aging, we sincerely appreciate the continued inclusion of the eldercare workforce in the National Plan to Address Alzheimer's Disease. We commend the Public Members of the Advisory Council on Alzheimer's Research, Care, and Services for your work.

EWA is especially grateful that you are taking time today to focus on training of the direct care workforce. To meet the demand for services and address high rates of turnover, direct care worker jobs should offer comprehensive training, certification, and career advancement opportunities. Dementia care training is essential to this. EWA also specifically applauds the Advisory Council's 2015 recommendation to prepare a workforce that is competent to deliver care to persons with advanced dementia and their families under 7b. In addition, EWA supports recommendation 9b to research the impact of caregiving and quality of life of caregivers.

EWA would like to stress the importance of the Advisory Council's support of geriatrics and gerontology education and training programs responsible for preparing the health care workforce that will be charged with implementing the National Plan. This responsibility falls primarily to the Health Resources and Services Administration (HRSA), which administers the programs within Title VII of the Public Health Service Act. In recent years, funding for most of these programs has remained level. As noted in previous recommendations from the Council, additional funding is essential if we are to expand the activities of these programs to address the needs of the growing number of older adults with Alzheimer's disease, related dementia, and other chronic conditions.

July 2015, HRSA awarded 44 grants in 29 states for the Geriatrics Workforce Enhancement Program (GWEP). The GWEP is the only federal program that increases the number of faculty with geriatrics expertise in a variety of disciplines who provide training in clinical geriatrics, including the training of interdisciplinary teams of health professionals, students, faculty, practitioners, direct care workers, and family caregivers. The new GWEP program is designed for greater flexibility for grantees to meet the needs of their community.

Some GWEP programs were awarded additional funding for Alzheimer's Disease Prevention, Education and Outreach program, which supports interprofessional continuing education to health professionals, including direct care workers, and family caregivers on Alzheimer's disease and related dementias. Regardless of whether the GWEP applied for this additional funding, all GWEP programs have a component of dementia care training.

In 2018, the new grant cycle for the GWEP grant will begin. Congress is also looking at the authorizing language Title VII and VIII to update the language to the current program. This is an opportunity for us to expand the program to additional communities where gaps exist.

Thank you again for the opportunity to be with you today and to share EWA's thoughts on strategies for ensuring that individuals with Alzheimer's and related dementias, and their families, can get the care and support they need. We greatly appreciate your work and your continued emphasis on preparing a well-trained workforce, including family caregivers, to meet the needs of all older adults.

Unfortunately I have struggled to write something because I have had a number of bad days. This is the exact reason why I have been asking for approval to speak at the meeting rather then submit it in writing. It not only allows me more time but I am able to focus on issues being addressed that would allow me to think better. Help joggle my mind on the issues at hand. I do wish you folks would start to treat me like I have a disability and allow me to do what should be done for people with disabilities. Would you take away the ramps for people in wheel chairs? It's about the same for me. I need to speak rather then write. It will only get worse for me unfortunately. Your actions are shutting me out of society.

I and Dr. Seth Keller are the co-chairs of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG), a group formed in 2010 with a mission to advocate for people with intellectual disability and their family and other caregivers when an adult with intellectual disability is affected by dementia (http://www.aadmd.org/ntg). The NTG is an affiliate of the American Academy of Developmental Medicine and Dentistry and is associated with the RRTC on Developmental Disabilities and Health at the University of Illinois at Chicago.

The issue we wish to raise today concerns the education of caregivers. It is estimated that some 95% of adults with intellectual disability reside in the community on their own, with friends, or with family. When beginning to show signs of cognitive decline, the onus of helping them cope with daily activities most often falls on their friends, housemates, or family -- directly or indirectly. We also recognize that Down syndrome, a condition affecting over 10% of adults with intellectual disability, presents with a high risk for Alzheimer's disease and typically the functional changes associated with dementia manifest when adults with Down syndrome are in their early fifties (a form of early-onset dementia). We also know that many housemates or caregivers are often unaware of the symptoms of dementia and are unaware of the best means of helping someone with whom they live with or who is in their care when dementia is present.

A similar challenge vexes provider agency personnel and administrators. We have found that many staff and other workers at intellectual disability provider agencies find themselves in the same situation -- often unaware of early symptoms and untrained in how to use best-practice care models. Further, with increasing life expectancy among adults with intellectual disability, including adults with Down and other at-risk conditions, many more adults are experiencing -- and will continue to experience -- aging-related challenges, including functional and cognitive decline and potentially various dementias. The progressive loss of daily personal care skills, and the accompanying increase in "challenging behaviors" associated with dementia can lead to tremendous frustration, angst, and dysfunction amongst staff involved in the care and support of individuals with dementia.

To address these challenges, the NTG developed a national multi-module education curriculum on intellectual disability and dementia that was first field-tested and rolled out in 2014. Since then, the NTG has made available a model two-day workshop, making use of the curriculum, designed for staff of aging, health, and disability agencies, as well as family caregivers, across the US. In the past two years, our NTG colleagues have conducted some 20 workshops exposing over 800 workers, administrators, and caregivers to the information covered in the workshops. The NTG is also working closely with the Health Resources Services Administration (HRSA) and its effort to create a national unified dementia training curriculum usable for enhancing the skills of the community workforce. This effort is designed to provide quality and experienced care and supports to persons affected by dementia and enhance the capabilities of their family caregivers to continue to provide home-based care. We have also liaised closely with the Administration on Community Living (ACL) with respect to this issue.

However, over the past couple of years, although expanding our capacity to provide training and education, we have found that the number of workers and home-based caregivers needing training continues to exceed our capacity -- as we are an unfunded and volunteer-based organization. Given the great need for expanded outreach and training, we were very pleased to see the introduction of HR.3090 and S.3113 which are the House and Senate versions of the 'Alzheimer's Caregiver Support Act' (and which would amend the Public Health Act). We are in support of this legislation; however, in reading over the language of the bills we find that both are remiss in any specific mention of the needs of caregivers of people with intellectual disability, including Down syndrome. This omission of a segment of the population recognized within the National Plan to Address Alzheimer's Disease as a 'special population' means that it may not receive due consideration if and when the legislation may be implemented.

Thus, we are asking the sponsors to consider amending their bills to include specific mention, so as to ensure that due consideration also will be given to and resources allocated for -- under the Act -- to intellectual disability. Specifically, we are recommending amending the language as follows: (1) Recognizing the needs of caregivers of persons with dementia who also have an intellectual disability; (2) Inclusion of 'intellectual disability' consistent with the definition in the Developmental Disabilities Assistance and Bill of Rights Act (PL 106-402); (3) Inclusion of 'disability organizations' under Section 330M, subsection (c) RECIPIENTS OF GRANTS; and (4) Inclusion of language under Section 330M, Subsection (e) COORDINATION, to include the fact that persons with intellectual disability are also a 'medically underserved' population.

We would hope that the Advisory Council, consistent with provisions in the National Plan to Address Alzheimer's Disease, will offer its support to this legislation -- and also support our 'ask' that consideration of the needs of caregivers of people with Down syndrome and other intellectual disability be added to the bill language.

The NTG's mission and goals -- that of enhancing the lives of adults with intellectual disability affected by dementia and integrating this segment of the US population into both the generic and specialized services and supports available to other adults affected by the dementia -- are in sync with the purpose of this legislation. Our focus has always been on advocating for greater supports for caregivers, including providing information that will enable them to cope, adapt, and continue to provide home-based care for as long as they are capable -- as well as advocating for their interests within the greater Alzheimer's community and among various national non-governmental organizations and state and federal agencies. We see this legislation as a vehicle to enhance the knowledge and capabilities of caregivers, as well as contributing significantly to their -- and their relatives or friends with intellectual disability -- quality of life when affected by dementia.

Thank you for the opportunity to address the Council today. Some of you may remember me as a regular attendee from the past, most especially during the period leading up to the release of the first National Plan. I return today as a Family Advocate for individuals with intellectual disabilities (ID) and their families and as a member of the NTG, a grass roots organization designed to increase the awareness of and services for those with ID who face the challenges of aging and dementia related decline.

Last July I had the privilege of addressing the Advisory Council as several of the Non-governmental members were ending their NAPA Advisory Council Terms. Many of those original members became champions of the cause of Down syndrome (DS) and Alzheimer's disease (AD). To them I am eternally grateful. It is a privilege to be back again today and to meet those of you who have more recently joined the Advisory Council.

In the past I came before this body to advocate for the inclusion of individuals with ID, most specifically those with DS as a special population to be specifically noted in the National Plan. I also frequently addressed the need for added research dollars dedicated to DS and AD. My passion for this issue is driven by the fact that my brother Bill, a.k.a. Harrison Ford, had DS and died in 2010 of complications of AD. He was 49 years old. Bill touched many lives and his early departure left a significant void. He was a compassionate man with a huge heart. He helped give meaning to life and continues to be sorely missed.

At the time of Bill's death we donated his brain to a research institution in hopes of making a contribution to the cure. It felt important to do so.

I am here today to express my gratitude to the NIH/NIA/NICHD for funding a $35 million dollar grant to address AD biomarkers in individuals with DS. This research will commence in the next month or so at several institutions across the US. Hopefully the outcome will result in improved early intervention and treatment for those with DS and for the general population as well. It is also my hope that this research will bring us closer to the goal of one day ending this devastating disease. I am most grateful to the NIH/NIA/NICHD for funding this initiative with this very special, often underserved, population.

I also wish to acknowledge the progress that has been made at the Administration for Community Living. They have awarded a limited numbers of grants that have promoted training and education in targeted sectors of the ID community. However, the need for information, training and support far exceeds what has been done to date.

Following the release of the First National Plan, during subsequent Advisory Council meetings, I spoke often of the desperate need of aging lifetime caregivers, often in their 80's, who were now supporting a family member with a dual diagnosis of ID/DS and AD. In some cases I noted to you that there have been diagnoses across two generations, a parent and their adult offspring with an ID/DS, an overwhelming burden of care for any family to maintain.

I am here today because:

• There are still families who are unaware of the relationship between DS and AD.
• There are individuals with ID and families who have limited options as AD progresses. They often ask:
  • How will they support their family member?
  • Will they be able to remain at home, often with aging parents, sometimes with a similar diagnosis?
  • Will they be able to "Age in Place" in their Group Home?
  • How will they move to be near family when funding is not always available with a change of locations?
  • How will they access a trained cohort of compassionate service providers who value them as people with a life story and a place in their community, providers who view them as more than just "a job"?
  • How do we give individuals with ID/DS a voice when they are often unable to self-report?
  • How do we make sure that they are not overmedicated or undertreated, that their physical, mental, social, emotional and spiritual needs are met?
  • How do make sure that their behavior is viewed as communication and an expression of an unmet need just like the general population.
  • Who will support these aging caregivers?
• I am here for all of those individuals I have met since 2010 to make sure that they are not forgotten

Today I am joined in spirit by the NTG and many families as I appeal to you to further include this special population in all aspects of expanded outreach, care planning, training and supports. I am here to ask that people with ID and DS be noted in the pending legislation, the "Alzheimer's Caregiver Support Act" and subsequent amendment of the "Public Health Act". The plight of individuals with ID/DS and families is real...the need continues to be great. Families who have been lifetime caregivers often feel abandoned. They have worked hard to independently provide care in the past. They now need extensive support that they struggle to or are unable to access.

I urge you to leave here today, more than 5 years after NAPA was signed and implemented, with a renewed awareness of and commitment to the critical needs that remain in existence today for this underserved group of people and their families. Thank you for your willingness to listen, to reflect and act on their behalf.

Mr. Mueller, at 90 years of age donated this home to Lucanus to open a 4 bed advanced dementia home. Mr. Mueller died of Alzheimer's and pleaded with Lucanus to enable his son with Down syndrome an d Alzheimer's disease to remain in the home and 3 other families.

Family centered is the process of empowering the family and person served to make an informed choice for their future and have the confidence and unwavering support from Lucanus and Erin to make their dream a reality.

It is interesting to note due to age of caregivers:

1) Gary was not walking when he came to Lucanus because Mr. Mueller at 90 never exercised and it was easier if David was in a wheelchair. The support coordinator stated he was in a wheelchair and could not walk.

The Lucanus founder Tom Buckley sr. founded Lucanus over 42 years ago, He asked Mr. Mueller who replied he will walk he just can't risk trying to support Gary when he can barely support himself

This is Gary in only 12 days he went from the wheelchair and walker to walking independently. His mood and self-worth changed immediately and from helplessness he walked all day every day because he was so happy to walk again.

This is David and Stephanie with my Sister Judy. They have both been at Lucanus for 35 years. We presented to the Florida Memory Disorder Center's at the Mayo Clinic. Thanks to your tremendous support all these incredible Hospitals have changed the lives for those we serve.

Stephanie just competed in the Florida Cheerleading competition and showed the second place. Ribbon.

At Lucanus, we did not get up to live everyday only to hope to die a good death. We focus on great ties together ad new memories to cherish.

Just two weeks ago Stephanie threw her diary away because she forgot to write in for three days. My sister found her diary in the trash and now they sit together every day and write her memories.

Some may say persons with down syndrome are not worth prolonging the life for the individual but if you're with Stephanie or her Mom, she not only adores her Mom and vice versa, but she writes the memories from her wonderful life.

These are our dementia care coordinators and David never leaves their side.

This is our new Health Home. The Tringo Family own this home and with Mr. Tringo's incredible IT background we have 16 cameras to prevent wandering, monitor 90% with seizures, and falls. We also have a dementia puppy chocolate lab. The Lucanus Center own our other 5 homes but the family are so worried about what will happen to their adult children that are taking the lead and fully partnering.

I have personally created 31 homes all specialized over my career. This is the first time the families felt incredibly empowered from Erin Long and so much so they went and told all the neighbors about their Son needing this home as a group home and living in the neighborhood 35 years.

The neighbor has a Son with Down syndrome but the Tringo were unaware. What an incredible difference it makes when the family speak the community and neighbors for their child rather than an organization.

My Son Andrew as Dementia Care Coordinator showing 89-year-old Mom how to use life. Mom fell 6 times lifting daughter.

David told his parents and all of us in the caregiver group he is not getting in the Hoyer lift the "Boys" will pick him up. David laughed for 30 minutes and said he is so glad to have brothers.

The Dementia journey is a reflection of your commitment, attitude and expression to your loved one. We serve 80 persons every day and have the greatest time because we all refuse to focus on a good death and we enjoy the days we are together and alive.

I attached a training curriculum we use for the Lucanus health Home to teach the Nova doctors, our Health Care guidelines for ID, and several forms in case your asked by a member of your community.

Thank you very much for appointing Erin and providing travel for her to Chicago--she was exceptional.

Take care, Tom

What is a health home?

A state Medicaid program defined in an SPA that is responsible for comprehensive care management; care coordination and health promotion; comprehensive transitional care/follow-up; patient and family support; referral to community and social support services; and use of health information technology (HIT) to link services. A Health Home program may be made up of several Health Home providers.

Health Home Provider: An individual provider, team of health care professionals, or health team that provides the Health Home services and meets established standards. States can adopt a mix of these three types of providers identified in the legislation:

• Designated provider: May be physician, clinical/group practice, rural health clinic, community health center, community mental health center, home health agency, pediatrician, OB/GYN, other.
• Team of health professionals: May include physician, nurse care coordinator, nutritionist, social worker, behavioral health professional, and can be free standing, virtual, hospital- based, community mental health centers, or other.
• Health team: Must include medical specialists, nurses, pharmacists, nutritionists, dieticians, social workers, behavioral healthcare providers, chiropractors, licensed complementary and alternative medical practitioners, and physician assistants. Health Home Enrollee. Medicaid beneficiary (adult or child) enrolled in a state Health Home program. Medicaid beneficiaries eligible for Health Home services:
  • Have two or more chronic conditions, or
  • Have one chronic condition and are at risk for a second, or
  • Have a serious and persistent mental health condition.?Health Home enrollees may include beneficiaries dually eligible for both Medicare and Medicaid.

Primary Care Provider. Physician or nonphysician (e.g., nurse practitioner, physician assistant) who offers primary care medical services. Licensed practical nurses and registered nurses (RN) are not considered primary care providers.

Mental Health Practitioner. A practitioner who provides mental health services and meets any of the following criteria:

• An MD or doctor of osteopathy (DO) who is certified as a psychiatrist or child psychiatrist by the American Medical Specialties Board of Psychiatry and Neurology or by the American Osteopathic Board of Neurology and Psychiatry; or, if not certified, who successfully completed an accredited program of graduate medical or osteopathic education in psychiatry or child psychiatry and is licensed to practice patient care psychiatry or child psychiatry, if required by the state of practice.
• An individual who is licensed as a psychologist in his/her state of practice.
• An individual who is certified in clinical social work by the American Board of Examiners; who is listed on the National Association of Social Worker's Clinical Register; or who has a master's degree in social work and is licensed or certified to practice as a social worker, if required by the state of practice.
• An RN who is certified by the American Nurses Credentialing Center (a subsidiary of the American Nurses Association) as a psychiatric nurse or mental health clinical nurse specialist, or who has a master's degree in nursing with a specialization in psychiatric/mental health and two years of supervised clinical experience and is licensed to practice as a psychiatric or mental health nurse, if required by the state of practice.
• An individual (normally with a master's or a doctoral degree in marital and family therapy and at least two years of supervised clinical experience) who is practicing as a marital and family therapist and is a licensed or certified counselor by the state of practice, or if licensure or certification is not required by the state of practice, who is eligible for clinical membership in the American Association for Marriage and Family Therapy.
• An individual (normally with a master's or doctoral degree in counseling and at least two years of supervised clinical experience) who is practicing as a professional counselor and who is licensed or certified to do so by the state of practice, or if licensure or certification is not required by the state of practice, is a National Certified Counselor with a Specialty Certification in Clinical Mental Health Counseling from the National Board for Certified Counselors (NBCC).

DRAFT of Chapter on Intellectual and Developmental Disability [Available as a separate link: https://aspe.hhs.gov/pdf-report/napa-public-comment-attachment-draft-chapter-intellectual-and-developmental-disability]

Primary Care of Adults with Developmental Disabilities, Canadian Family Physician (2011, 57:541-53) article [Available as a separate link: https://aspe.hhs.gov/pdf-report/napa-public-comment-attachment-primary-care-adults-developmental-disabilities]

Family Medicine Curriculum Resource: Adults with Developmental Disabilities [Available as a separate link: https://aspe.hhs.gov/pdf-report/napa-public-comment-attachment-family-medicine-curriculum-resource]