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

• M. Ellenbogen  |  04-15-2016
• M. Janicki  |  04-20-2016
• M. Sharp  |  04-20-2016
• P. Shenian  |  04-13-2016
• E. Sokol  |  04-20-2016

Hello. My name is Matt Sharp, Program Manager for The Association for Frontotemporal Degeneration (AFTD). Thank you once again for the opportunity to comment on behalf of our 'related dementia" FTD. I was lucky to be at the 2016 Alzheimer's Disease-Related Dementia Summit in Bethesda last month and haven't stopped thinking about everything that happened during the two-day event.

AFTD Director Susan Dickinson was honored to co-chair a new session on Non-Governmental Organizations and we are grateful for the opportunity to help develop recommendations on how NGO's can facilitate and promote bio-medical research and build stronger partnerships between the academic researchers working on the "related-dementias", the federal institutes providing the funding.

One of the more surprising things I heard at the summit was that most people who are diagnosed will have a mix of different pathological changes in their brain and it is usually possible to find signs of multiple diseases when looked for by autopsy. So even though people are diagnosed as having a single disease, dementia is actually much more complicated and messy and until biomarkers are found for all the pathologies associated with dementia researchers need to acknowledge that the names we currently use for diagnoses don't accurately reflect the complex biology of these diseases.

Along those same lines, we are very much looking forward to the work of dementia nomenclature working group as recommended at the 2016 summit. The task of developing a coherent and consistent nomenclature and clarifying the language used by all stakeholders involved with dementia in all its medical, social and cultural complexity is daunting to say the least but AFTD is eager to help however we can.

The progress being made in research on the related dementias, and especially FTD, is truly exciting. The 2016 ADRD summit made it clear that this research is necessary to treat, cure and ultimately prevent not only the related dementias, but Alzheimer's disease as well.

• Later this afternoon the NAPA Advisory Board will be hearing about a proposal to hold a research summit on care and services.

• AFA supports the idea of a caregiver summit and, to be truly successful, the Department of Health and Human Services needs to fully participate and engage in the planning and execution of such an event.

• Innovative caregiver models that incorporate specialized dementia training and supports have the potential to save resources by lower hospital admissions, re-hospitalizations and emergency room visits as well as delaying placement in more costly institutional settings.

• For example, empowering caregivers to conduct environmental assessments will lower incidences of falls. Prescription adherence techniques will ensure better management of comorbidities; caregiver training can also help diffuse confusion or agitation in a person with dementia.

• In addition to better outcomes, there are opportunities for cost savings. An independent study of a Minnesota dementia caregiver program that provided training and support found that, if fully implemented, the program would save the state nearly $1 billion over 15 years.

• As demonstrated in Minnesota, small investments in supports that provide caregiver tools and strategies yields major savings and better outcomes.

• In addition, the Senate Finance Committee has convened a Bipartisan Chronic Care Working Group which is looking at proposals that seek to increase care efficiencies, provide better health outcomes and lower overall care costs for Medicare beneficiaries with chronic conditions including people living with dementia.

• Given this uptick in interest, now is the time to hold a caregiver summit that can examine such person-centered models to see what works, how innovative models can be scalable and identify where there are policy gaps.

• Such a caregiver summit can provide valuable information to jumpstart a legislative effort to adopt such caregiving models that promote efficiencies, saves resources and keeps persons receiving care in the home longer.

• Thank you for your time and the opportunity to offer comments.

I am Matthew Janicki. Along with my colleague, Seth Keller, we are the co-chairs of the National Task Group. Our Group's goal is to work with the Advisory Council and the National Plan to Address Alzheimer's Disease to promote the inclusion of the concerns and needs of adults with intellectual disabilities affected by dementia, as well as their families and caregivers. We have been in place since the passage of the National Alzheimer's Project Act and the inception of the Council. Today, on behalf of our Group, I would like to inform the Council of what our Group has been doing to aid in carrying out aspects of the National Plan on behalf of people with intellectual disability.

1. The 2014 HCBS Rule

   Some of you may be familiar with the January 2014 issuance of the Centers for Medicare and Medicaid Services (CMS) new Home and Community-based Services (HCBS) rules which established guidelines for services and supports that may be financed through several Medicaid long-term supports and services programs (Final Regulation CMS-2249-C/CMS-2296-F) -- sometimes referred to as the "HCBS Settings Rule".ⁱ According to the rule, federal financial participation is enabled if home and community based services are provided in settings that focus on the needs of persons with intellectual disability as noted in their person-centered support plan. There are a number of requirements on services to ensure that they comply with community inclusion (including being integrated and providing support for full access to the greater community; being selected by the individual from among options including non-disability specific settings; ensuring the individual's rights to privacy, dignity, and respect; optimizing individual initiative, autonomy, and independence in making life choices, and facilitating individual choice regarding who provides the service). There are also some conditions related to settings when owned or controlled by a provider. According to the rule, the onus is on each state plan authority to show that it is in compliance and to submit a transition plan demonstrating how compliance will be brought about.

   The NTG lauds the efforts of CMS to create a vehicle for system change and provide protections for individuals with disabilities so as to maximize personal choice, decision-making and community inclusion. However, with respect to older persons with intellectual disability affected by dementia, we find that the rules are silent with respect to optimizing community supports. In the developmental disabilities system in the US, much is being made of trying to preclude (re)institutionalization of adults with intellectual disability when affected by dementia. We have been informed by many providers that as the CMS rules are silent on the application to persons with dementia, they are worried that states may not make reasoned judgements that maximize community living among adults with dementia in fear of not being compliant with the rules. We have been informed that informal counsel from CMS is that the main vehicle for compliance with respect to dementia is through the artful application of each individual's person-centered support plan.ⁱⁱ While we support this approach, there is a need to ensure relative uniformity and offer relief from having each provider individually engage their state plan entity in negotiating this process.

   We would like to propose that the NTG and other interested parties sit with CMS and collectively develop an interpretive letter or fact sheet for state plan entities for the application of the rules to situations of community housing for people with intellectual disability affected by dementia and would ask the Council to join us in supporting this resolution.

2. Workforce Enhancement Efforts

   The NTG has used its specially developed educational curriculum on dementia and intellectual disability (specifics available at http://aadmd.org/ntg/education-and-training)--consistent with the National Plan's Strategy 2.A: Build a Workforce with the Skills to Provide High-Quality Care.ⁱⁱⁱ Since 2014, we have run a series of two-day workshops across the United States ("Dementia Capable Care of Adults with Intellectual Disabilities and Dementia"), including in most cases a third day 'train-the-trainer' component.^iv To date approximately 570 workers at various levels have attended the intensive two-day trainings, along with another approximate 800 who have attended our one-day NTG capacity building workshops on dementia and intellectual disabilities. Our 18 module NTG Education and Training Curriculum on Dementia and Intellectual and Developmental Disabilities is available for use by trainers who have completed the train-the-trainer program as well as those who are part of HRSA's Geriatric Workforce Enhancement Programs. At this point we are scheduling one to two two-day workshops per month. In addition, drawing upon the curriculum and other materials produced by the NTG, we are collaborating with the National Down Syndrome Society and the Alzheimer's Association to produce an informational and educational booklet on dementia and Down syndrome usable by family and other non-paid caregivers. We expect this booklet to be available in early 2017.

3. Collaboration with ACL's Alzheimer Disease Initiative Grantees

   The NTG has had contact with a number of the Administration on Community Living's ADI grantees that have included efforts to aid adults with intellectual disabilities affected by dementia and their caregivers. We have organized or are organizing targeted workshops and other trainings for a number of the 41 grantees, for example, projects in Rhode Island, California, Hawaii, and Florida. We are also working with grantees to aid them in using the NTG-EDSD--the NTG's early detection and screening instrument specifically developed for use with persons with intellectual disability. The instrument is being (or will be) used to help with screening referrals for the grantee's services, to record demographic and clinical information to help with channeling supports and services, and to help with tracking changes in function and health. The NTG-EDSD has been adopted for nationwide use in Scotland and has been translated into a number of languages for use in the US and overseas. We commend the ACL for incorporating the needs of persons with intellectual disability within the Alzheimer Disease Initiative grant program and look forward to being of assistance to these and other grantees over the course of the National Plan.

4. Research Summit on Care and Services

   The NTG would like to have the Council know that it fully supports the holding on the Research Summit on Care and Services. We recognized that national statistics document that a significant number of adults with intellectual and developmental disabilities (I/DD) continue to remain at home residing with family, whether parents, siblings or other kin.^v Others live in family situations with non-relatives who are surrogate caregivers.^vi As there is a body of research on the nature of extended, often life-long caregiving among these caregivers, as well as the different challenges and adaptations experienced by lifelong caregivers when contrasted to late-life caregivers, the nature of adaptations to caregiving when adults with I/DD begin to experience dementia, and the progression through the course of Alzheimer's disease or related dementias, it is our position that the inclusion of issues related to intellectual disability should be included within the Research Summit.^vii

   We envision that contributing to this area of inquiry and the resultant recommendations relative to the institution of federal and state-based policies and funding schemes to aid this category of caregivers, contributing to practice guidelines for agencies responsible for supporting aging caregivers and caregivers of older adults with I/DD affected by dementia, and translating viable practices from caregivers of adults with I/DD to general caregivers and vice versa--would be of assistance to the Council as it formulates is successive iterations of the National Plan.

5. Summit on Dementia and Intellectual Disability

   We would like the Council to know that there are still a number of outstanding and unresolved issues related to dementia and people with intellectual disability that warrant an international dialogue to correspond with the 'Glasgow Declaration' which addresses 'dignity and autonomy in dementia".^viii Thus, the NTG, along with the Rehabilitation Research and Training Center on Developmental Disabilities and Health at the University of Illinois at Chicago, has been in consultation with colleagues at the University of the West of Scotland (UWS) and Alzheimer Scotland to organize an 'international summit' on intellectual disability and dementia to be held October 13-14, 2016 in Glasgow, Scotland. The summit will be geared to developing a major international policy statement on a number of areas related to dementia and adults with intellectual disability, including (a) human rights and the Convention on the Rights of Persons with Disabilities (CRPD), (b) nomenclature, (c) advanced dementia and end-of-life care practices, (d) family caregiver supports, (e) community dementia capable care practices, and (f) advocacy for inclusion of persons with intellectual disability in national Alzheimer's disease plans.^ix We anticipate a number of international delegates attending from Europe and North America and expect that the summative document produced will be of help to the World Health Organization, Alzheimer Disease International, Alzheimer Europe, national Alzheimer societies and related entities, as well as developmental disability providers, in Europe and North America, various governmental entities, and national advocacy and plan bodies such as the Advisory Council.

   As this 'summit' will have many applications, we cordially extend an invitation to any Council member who would wish to attend.

NOTES:

i. Larson, S.A., Hallas-Muchow, L., Aiken, F., Taylor, B., Pettingell, S., Hewitt, A., Sowers, M., & Fay, M.L. (2016). In-Home and Residential Long-Term Supports and Services for Persons with Intellectual or Developmental Disabilities: Status and Trends through 2013. Minneapolis, MN: University of Minnesota, Research and Training Center on Community Living.

ii. Nocon, M. (2016). Addressing the need to accommodate delayed egress via IPPs. Spring Valley, CA: Noah Homes.

iii. US DHHS. (2014). National Plan to Address Alzheimer's Disease: 2014 Update. Washington, DC: Author

iv. http://aadmd.org/ntg/education-and-training

v. Larson et al. Ibid.

vi. Jokinen, J. Janicki, M.P., Keller, S.M., McCallion, P., Force, L.T. and the National Task Group on Intellectual Disabilities and Dementia Practices. (2013). Guidelines for structuring community care and supports for people with intellectual disabilities affected by dementia. Journal of Policy and Practice in Intellectual Disabilities, 10(1), 1-28.

vii. National Task Group on Intellectual Disabilities and Dementia Practice. (2012). 'My Thinker's Not Working': A National Strategy for Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports. http://www.aadmd.org/ntg/thinker

viii. http://www.alzscot.org/campaigning/international_activity (Glasgow Declaration)

ix. National Task Group on Intellectual Disabilities and Dementia Practices. Ibid.

I serve on many boards. Unfortunately, though, I miss a lot of what is being said when people are speaking. It's hard to admit, but that is the truth. I have spoken to others who have dementia and they tell me the same story. Because of that reason alone, I believe it is unjust to have only one person living with the disease on any board. It not only puts them in an unfair position but it will surely contribute to not getting the proper feedback, which, I assume, is why you ask us to serve on the committee in the first place. While I have recommended this before, I strongly recommend you add at least another person living with dementia to the council. After all, you have two representatives for caregivers, although I am not sure why you would think they need a larger presence than those you are trying to help. They did hear my request at the World Dementia Council. And if you are looking to follow the best model, just look at Dementia Action Alliance, they have 9 diverse individuals living with dementia. Since I believe you are supposed to be the leader in this mission shouldn't you start by setting the right example for others to follow.

On another note, and sounding like a broken record, it would sure be great if I could speak on the phone or internet. Instead, I need to work countless hours with the help of others, to create my comments as my spelling is no longer readable. So you can fix the track before the next meeting.

I am Pop Shenian. I am a Board member of The Association of Frontotemporal Degeneration (AFTD), based in Radnor, Pennsylvania.

FTD is early form dementia affecting language behavior and speech

I am proud to announce annual caregiver conference and board meeting will be held in Minneapolis in May

Our keynote speakers will be Brad Bove and David Knopman, who are Ron Peterson's associates

My family is fully vested with AFTD. My dad had ftd, and my mom was a founding board member

I was also a caregiver

I was fortunate to be close friends with the late Senator Arlen Specter who helped me early on with my advocacy work in Washington.

I am here today to advocate on behalf of AFTD but I speak on behalf of all families battling AA and related dementias.

There is power in numbers and I am optimistic with the help of the Council and HHS that we will find treatments and get to a cure

Thanks to the council for all your hard work.