Is There Light at the End of the Tunnel? Opportunities for PACE in Guiding Care for Older Adults with Lifelong Intellectual Disabilities

Lynda Davis, LCSW-C, Social Worker, Hopkins ElderPlus, Baltimore, MDMatthew McNabney, MD, Medical Director, Hopkins ElderPlus, Baltimore, MD

S. Hanlon Newhall, OTD, OTR/L, MEd, Occupational Therapist, Hopkins ElderPlus, Baltimore, MD

Myth or Fact?The average waiting list of services for elderly people

with intellectual disabilities (ID) is one year.

Myth or Fact?The average waiting list of services for elderly people

with intellectual disabilities is one year.

Myth! Nationwide, there are 268,000 people on waiting lists for home and community-based services. People on wait lists for

Medicaid Waivers for Developmental Disability programs have an average wait time of almost 3 years. Some states have waiting lists

in excess of 10 years.

Myth or Fact?

More than half of elderly people with intellectual disabilities live in group homes.

Myth or Fact?

More than half of elderly people with intellectual disabilities live in group homes.

Myth! Only 13% of adults with ID live in supervised residential settings.

Myth or Fact?

The number of older adults living with intellectual and developmental disabilities (IDD) has remained stable

over time.

Myth or Fact?

The number of older adults living with intellectual and developmental disabilities (IDD) has remained stable

over time.

Myth! According to the 2010 Census, 850,600 people with IDD were living in the community. The number is estimated to increase to 1.4 million by 2030 (Factor et. al, 2012).

Myth or Fact?

Individuals with IDD are likely to be in poorer health and experience earlier age-related decline and health conditions than those without disability.

Myth or Fact?

Individuals with IDD are likely to be in poorer health and experience earlier age-related decline and health conditions than those without disability.Fact!- More likely to be obese or overweight (Hsieh, Rimmer, & Heller, 2013).- More likely to have diabetes, oral disease, and osteoporosis (Haveman et

al., 2009; Acharya, Schindler, & Heller, 2016). - Higher risk for falls (Hsieh, Rimmer, & Heller, 2012).- Decreased access to healthcare (Haveman et al., 2009; Krahn & Drum, 2007;

Perkins & Moran, 2010).

Myth or Fact?Day programs for people with intellectual disabilities are designed for older adults.

Myth or Fact?Day programs for people with intellectual disabilities are designed for older adults.

Myth! Day programs are designed for younger people with intellectual disabilities.

- Sheltered workshops (warehouse-style appearance)- Focus on employment and extracurricular classes

Myth or Fact?

Behavioral issues experienced by individuals with intellectual disabilities are usually attributed

to co-existing psychiatric conditions.

Myth or Fact?

Behavioral issues experienced by individuals with intellectual disabilities are usually attributed

to co-existing psychiatric conditions.

Maybe both? Behavioral issues are not necessarily attributed to psychiatric illness. Roughly 20% of individuals with IDD take

anti-psychotic medications.

Definitions

Intellectual disability (intellectual and/or developmental disorder) “disorder with onset during the developmental period that includes both intellectual and adaptive functioning deficits in conceptual, social, and practical domains. The following three criteria must be met:

1. Deficits in intellectual functions such as reasoning, problem solving, planning, abstract thinking, judgment, academic learning, and learning from experience, confirmed by both assessment and individualized, standardized intelligence testing;

2. Deficits in adaptive functioning that result in failure to meet developmental and sociocultural standards for personal independence and social responsibility. Without ongoing support, the adaptive deficits limit functioning in one or more activities of daily life, such as communication, social participation, and independent living, across multiple environments, such as home, school, work, and community.

3. Onset of intellectual and adaptive deficits during the developmental period.”

DSM 5, p. 33

Case 1: Alan70-year-old African American male with

moderate intellectual disability

Cared for at home by his brother and

sister-in-law

Institutionalized from young age until early

adulthood, then cared for by his mother until

her death.

History of some paid work in an office

and a greenhouse

Enjoys gardening, being outside,

exercising, and arts and crafts

Other medical diagnoses:

Osteoarthritis, Vitamin D deficiency,

hyperlipidemia

Case 1: Allen

Case 2: Mary57-year-old white female

with autism spectrum disorder, undifferentiated schizophrenia, intellectual disability, and borderline

personality disorder

Cared for at home by her sister

In and out of group homes her whole life

Completed 11th grade, history of

volunteer work for Christian mission

Enjoys socializing, playing Bingo, and

talking about animals.

Other medical diagnoses: Vitamin D deficiency, Ventral

hernia, Functional urinary incontinence, Essential

hypertension, Type 2 diabetes mellitus with hyperglycemia,

Class 3 severe obesity

Case 3: Sam70-year-old African American male with intellectual disability

Cared for at home by his sister

Always lived with family members (his

parents, his sister)

Educated in special schools, no

employment history

Enjoys music, socializing, and

Bible Study

Other medical diagnoses: Prostate cancer, Essential

hypertension, Diabetes mellitus type 2 without retinopathy, Nuclear

sclerotic cataract of both eyes

What are these individuals’ needs?

How can the PACE model of care address these needs?

An Aging Individual with IDD (Without PACE) • Low levels of physical activity

• Restricted access to community

• Decreased social support and interaction

• Decreased access to and participation in health planning

• At risk for institutionalization

• Increased likelihood of untreated depression and anxiety

An Aging Individual with IDD (and PACE!)

General PACE offerings for these individuals:

Person-centered, interdisciplinary care planning

Ongoing physical and mental health monitoring and treatment

Socialization and engagement in meaningful activities

Environment conducive to aging in place

Access to community resources

“The provision of an enriched environment can enable a person to move beyond a position of passivity and provide opportunity to engage in the performance of activities that support adaptive, as opposed to maladaptive, behaviors necessary for life.” (Wood, 1998)

A Social Work PerspectivePACE offers a therapeutic milieu where people with intellectual disabilities and their families can:

• Learn social and communication skills.• Engage in meaningful and

purposeful activities.• Get supportive counseling and/or

psychotherapy that is trauma-informed.• Assistance with planning for the future

regarding who will care for them once their caregivers are no longer available.

• Caregiver support.• Neurodiversity.• Example (see Video).

Social Work Cases

Social Work Care plans include the following problems, goals, and interventions:

Case #1 Case #2 Cases #1, #2, & #3

Problem: Reasoning and Judgment

Problem: Anxiety Problem: Caregiver support

Goal: Participant will be encouraged to bring issues to staff.

Goal: Participant will remain safe in the community with family and HEP support.

Goal: Support will allow caregiver to safely maintain participant in current setting.

Interventions: Provide outlet for expression of feelings/concerns; encourage participation in activities, groups; and encourage participant to bring issues to staff as needed.

Interventions: Participant will be followed by psychiatry; Social Worker will provide 1:1 with participant and family for psychosocial needs; and Caregiver/family, participant and HEP staff to report any concerning changes in behavior or mood to medical staff.

Interventions: Provide 1:1 caregiver support through: phone calls, home visits; make appropriate referrals: caregiver support group; provide education about issues related to participant's diagnosis; and offer respite.

A Medical Perspective

Medical conditions include:

Associated health conditions - those which led to the IDD

Comorbid conditions - those concomitant but unrelated

Secondary conditions - experience at higher

rate and felt related

A Medical Perspective• Importance of correct diagnosis

• Low I.Q. (less than 70-75)

• Significant limitations in adaptive behaviors

• Onset before age 18

• Most common syndromes associated with intellectual disability: autism, Down syndrome, Fragile X syndrome and Fetal Alcohol Spectrum Disorder (FASD).

• Inaccuracies over the lifespan - under &

over-diagnosis of mental capabilities

• Developmental disabilities

• Mental health disorders

A Medical Perspective

Krahn 2006

A Medical Perspective• Medical issues associated with intellectual disabilities (over time); variability across

types of ID

• Variability depending type of study (chart review, patient evaluation)

• Hearing (66%), vision (64%), seizures, cardiovascular disease; MSK disorders (joints/mobility); Obesity; Nutritional Deficiencies

• Co-incidental medical issues with intellectual disabilities

• Random, according to genetics and risk factors

• At risk for not being identified or risk stratified

Hahn 2012

A Medical Perspective

• Proper screening

• Recommended approach (risk/benefit, prognosis,

preferences)

• Autonomy/medication adherence

• End-of-life planning and care

A Medical Perspective

Krahn 2006

A Medical Perspective

Krahn 2006

PACE can impact these!

Medical Provider: CasesCase #1 Case #2 Cases #3

Medical Issues/Problems Seizure (?) after traumatic brain injury as child; Vit D deficiency, high cholesterol

Diabetes, Obesity, Abdominal surgeries (with complications)

Hypertension, DM, prosate cancer (2006) with conservative rx; high cholesterol (several CAD risk factors)

Listed Mental Health Diagnoses

Traumatic brain injury (TBI)

Bipolar/schizophrenia None listed

Medications Vitamin D, pravastatin Lantus insulin, meformin, sertraline amlodipine

Lisinopril, atenolol, metformin, pravastatin, aspirin

Other issues Loneliness, reclusive (before PACE)

Adherence issues (medications, diet)

Has always “walked” around the neighboord (and continues to do so)

An Occupational Therapy PerspectiveEmphasis on “occupation” and quality of life:

Sedentary lifestyle, low levels of physical activity

Maladaptive behaviors

Engagement in individual and group exercise, social and leisure participation

Environmental stimulation and support for adaptive behaviors

Opportunities to learn new skills and habits and build competence

Occupational deprivation and decreased capacity

(Channon, 2014)

Active Aging for Older Adults with IDD

• Active involvement

• Daily routine with meaningful activity

• Maintaining skills and learning

• Satisfying relationships and support

• Safety and security

(Buys et al., 2008)

Allen’s abilities/interests:

- Sociable- Enjoys nature and

gardening- Can follow through with

tasks after demonstration

Allen’s challenges:

- Cannot read or write- Difficulty interpreting social

cues

Mary’s abilities/interests:

- Can read, write, and count- Enjoys community outings- Loves animals, particularly

cats- Great memory- Friendly

Mary’s challenges:

- Resistant to hygiene tasks- Challenging behaviors

toward caregiver- Social appropriateness

Sam’s abilities/interests:

- Enjoys being around others - Enjoys listening to music- Physically able to follow

visual demonstrations of movements

Sam’s challenges:

- Limited verbal communication and expressive language

- Limited attention span

Strategy swap and discussionCharacteristics of

participants with IDD at your PACE site

Strategies you have tried with participants with IDD

at your site

Strategies you may try with participants with IDD at

your site

Questions?

Our contact information

Lynda Davis, LCSW-C, Social Worker, Hopkins ElderPlus, Baltimore, MD ldavis9@jhmi.edu, (410) 550-7126.

Matthew McNabney, MD, Medical Director, Hopkins ElderPlus, Baltimore, MD mmcnabne@jhmi.edu, (410) 550-7044.

S. Hanlon Newhall, OTD, OTR/L, MEd, Occupational Therapist, Hopkins ElderPlus, Baltimore, MD smyers33@jhmi.edu, (410) 550-7051.

ReferencesAmerican Psychiatric Assocation (2013). Diagnostice and Statistical Manual of Mental Disorders Fifth Edition. Washington DC: American Ps ychiatric Publis hing.

Buys , L., Boulton-Lewis , G., Tedman-J ones , J ., Edwards , H., & Knox, M. (2008). Is s ues of active ageing: Perceptions of older people with lifelong intellectual dis ability. Australian Journal on Ageing, 27(2), 67-71.

Channon, A. (2014). Intellectual dis ability and activity engagement: Exploring the literature from an occupational pers pective. Journal of Occupational Science, 21(4), 443-458.

Haveman, M., Heller, T., Lee, L., Maas kant, M., Shoos htari, S., & Strydom, A. (2009). Report on the state of science and ageing in people with intellectual disabilities. IASSID Special Interes t Res earch Group on Ageing and Intellectual Dis abilities / Faculty Rehabilitation Sciences , Univers ity of Dortmund (Germany).

Heller, T. (2017). Service and s upport needs for adults aging with intellectual/ developmental dis abilities . Disability and Human Development, College of Applied Health Sciences, University of Illinois at Chicago, 1-10.

Hs ieh, K., Rimmer, J ., & Heller, T. (2012). Prevalence of falls and ris k factors in adults with intellectual dis abilities . American Journal on Intellectual and Developmental Disabilities, 117(6), 442-454.

Hs ieh, K., Rimmer, J ., & Heller, T. (2013). Obes ity and as s ociated factors in adults with intellectual dis ability. Journal of Intellectual Disability Research, 58(3), doi: 10.111/ jir.12100.

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Krahn GL, Hammond L & Turner A. (2006). A cas cade of dis parities : Health and health care acces s for people with intellectual dis abilities . Mental Retardation and Developmental Disabilities Research Reviews, 12, 70-82,

Perkins EA & Moran J A. (2010). Aging adults with intellectual dis abilities . JAMA, 304(1), 91-91.

Wood, W. (1998). Biological requirements for occupation in primates : An exploratory s tudy and theoretical analys is . Journal of Occupational Science, 5(2), 66-81.

Zagaria, M.E. (2011). Intellectual dis ability: Highlighting s enior care is s ues . U.S. Pharmacy, 36(11), 29-34.