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Aging with intellectual disability

26 Nov

Care for the developmentally disabled has improved over recent generations and life and expectancy has increased. As a result, issues surrounding old age need more attention. Two studies out recently open the dialogue in two areas: hospice care and retirement options.

Advanced age and end of life concerns present areas often not focused upon by parent advocates with developmentally disabled children. There are many issues which are more immediate and time and energy are limited. But few parents will be present to advocate for their own children at end of life. These are prime examples of where listening to adults with DD and helping them advocate for changes will pay off in a better life for our kids.

Here are the abstracts:

Unique and universal barriers: hospice care for aging adults with intellectual disability.

Friedman SL, Helm DT, Woodman AC.

Abstract As life expectancy of people with intellectual disability (ID) has increased, there has been a concurrent increase in age-related illnesses and conditions similar to that of the general population. These circumstances result in people with ID dying from typical life-ending conditions, and thus, they require similar end-of-life services such as palliative and hospice care. Although there are notable barriers to hospice for all, people with ID face additional challenges in accessing the benefits of these services. This article presents a review of the literature on these issues, underscoring the multiple challenges and the importance of a more collaborative approach between hospice and palliative care workers with people with ID, their families, and other important stakeholders.

PMID: 23167489 [PubMed – in process]

8. Am J Intellect Dev Disabil. 2012 Nov;117(6):497-508. doi: 10.1352/1944-7558-117-6.497.

Active aging for individuals with intellectual disability: meaningful community participation through employment, retirement, service, and volunteerism.

Fesko SL, Hall AC, Quinlan J, Jockell C.

Abstract As individuals with intellectual and developmental disabilities become more engaged in community employment, it will be critical to consider how their employment experience changes as they age. Similar to other seniors, individuals will need to consider whether they want to maintain their employment, reduce their work commitment, or retire completely. If they do choose to retire, what activities will they choose to engage in, and what service or supports might be necessary? This article considers the issues faced by all aging workers in regard to retirement planning and active aging as well as specific strategies for individuals with intellectual and developmental disabilities to remain active and engaged. Recommendations for service options, policy consideration, and future research are also discussed.

PMID: 23167488 [PubMed – in process]
9. Am J Intellect Dev Disabil. 2012 Nov;117(6):455-63. doi: 10.1352/1944-7558-117.6.455

“We want respect”: adults with intellectual and developmental disabilities address respect in research.

21 Aug

The concepts of neurodiversity are not complex and yet are often misunderstood and misrepresented. Respect is not a difficult concept. The need for research to respect those who are the focus is not difficult.  Respect includes aknowleging that disability does not disenfranchise a person from her human rights. Respect means including the views and opinions of those involved in the research, even if they are intellectually disabled.

Consider this recent study:

“We want respect”: adults with intellectual and developmental disabilities address respect in research.

Abstract Respect is central to ethical guidelines for research. The scientific community has long debated, and at times disagreed on, how to demonstrate respect in research with adults with intellectual and developmental disabilities. To illuminate the voices of those most affected, the author studies the views of adults with intellectual and developmental disabilities on respect in research. Findings are consistent with disability rights’ ideas and indicate that adults with intellectual and developmental disabilities have much to contribute to the discussion, that they value participating, and that they agree with calls to focus on human rights and dignity. Notably, participants spoke at lengths about the nature of interactions between researchers and participants. Implications are discussed, including how to infuse research standards with community-supported values and preferences.

For emphasis: ” . Findings are consistent with disability rights’ ideas and indicate that adults with intellectual and developmental disabilities have much to contribute to the discussion, that they value participating, and that they agree with calls to focus on human rights and dignity.”

Call it “human rights and dignity” and it isn’t a controversial concept. It may not be always followed but it isn’t controversial. Call it “neurodiversity” and somehow it’s a big deal.

One of the misconceptions I’ve read is that neurodiversity is a topic for so-called “high functioning” autistics. Many comments have come through this site calling my child “high functioning” because of the views expressed here. (Those commenters assumed incorrectly).  Here’a something to consider: the study noted above not only focuses on people with intellectual disability, it makes no mention of autism in the abstract.   The study did not even come through in my daily email of pubmed autism abstracts.

That’s not for our kids

28 Apr

A recent Guardian Roundtable touched on an interesting subject for those of us who are responsible for children with learning difficulties. The article was written, sourced and published in the UK but I believe it applies everywhere in the world where there are children with learning difficulties.

Just 6.4% of people with learning disabilities are in paid employment and that stark statistic – and the shocking waste of financial (and human) resources behind it – formed the backdrop for a recent Guardian roundtable discussion.

This issue has its root, I believe, in the way we are led to think about our children from birth:

When it comes to setting expectations for a child with learning disabilities, things can start to go wrong the moment they are born. The roundtable heard how health staff use their “breaking bad news” training to counsel parents, leaving them with the impression that there’s not much incentive to look forward to the future.

I remember the day we received the news that our child was autistic with profound learning difficulties. There were 3 calm staff members and a box of tissues on the table. By the time we left, the tissues had been used – and although the staff were gentle, kind and wonderful people who clearly were fond of our child – they too fell into that trap of ‘breaking bad news’ mode. A mode that, by its very tenor, fulfills the expectation of _being_ bad news.

The truth is, in my opinion, that with a little effort from health care agencies we can move from:

staff at one special school who, when the issue of employment was raised, replied: “That’s not for our kids.”

to a de facto position as espoused by agencies like Remploy who are the UK’s leading provider of employment services to people with disabilities.

But we’re not anywhere near that yet. In my own experience too many parents of people with special needs are content to wallow in the comfort of ‘putting it off’ – their children are still young. But consider this – we are far longer a time adults than we are children. Our children need to learn how to function in the world. This won’t be brought about by sham cures and ideaslistic fights against a strawman army. Neither will it be brought about by those who insist on misrepresenting the nature of what autism is to all rather than some.

One speaker summed up the fundamental question underpinning the whole debate: “Do we believe that people with learning disabilities and their families are worth it?”

Are they worth the upheaval and political effort it would take to transform a system that often fails them when it come to finding work?

In any society that claims to be fair, children with learning disabilities surely deserve the same life chances as other young people, the roundtable heard. They should be encouraged to have ambition

Social-sexual education in adolescents with behavioral neurogenetic syndromes

30 Mar

A recent paper abstract I read brought up a very important topic which I don’t see discussed much: sex education for adolescents with developmental disabilities. I don’t know how good the paper itself is, but I agree with the conclusion: “Social and sexual education programs are of the utmost importance for adolescents with neurogenetic developmental disabilities. ” On one level I don’t want to think about sex and my kid. But I also have run into a belief that sex isn’t a topic to consider for people with developmental disability and autistics in particular. Perhaps I am naive, but I don’t see this as a good approach. I think sexuality is too important a topic to leave unaddressed. The discussion is going on. Just rarely in the parent-oriented online world.

Isr J Psychiatry Relat Sci. 2010;47(2):118-24.
Social-sexual education in adolescents with behavioral neurogenetic syndromes.

Plaks M, Argaman R, Stawski M, Qwiat T, Polak D, Gothelf D.
The Behavioral Neurogenetics Center, Feinberg Department of Child Psychiatry, Schneider Children’s Medical Center of Israel, Petah Tikwa, Israel.

BACKGROUND: Adolescents with developmental disabilities have unmet needs in their sexual and social knowledge and skills. We conducted a sexual social group intervention in adolescents with neurogenetic syndromes, mainly with Williams and velocardiofacial syndromes and their parents.
METHOD: Ten adolescents with neurogenetic syndromes and 14 parents participated in a Social Sexual Group Education Program. The program was delivered in 10 biweekly sessions to the adolescents and their parents separately.
RESULTS: The focus of psychoeducation in both groups was the adolescents’ self-identification, acceptance of the developmental disability, independence, establishment of friendship and intimate relationship, sexual knowledge and sexual development, and safety skills. Change in independent activities of adolescents and in their concept of “Friend” was measured.
CONCLUSIONS: Social and sexual education programs are of the utmost importance for adolescents with neurogenetic developmental disabilities. These programs should start already before adolescence and follow the children into young adulthood.

The Arc Action Alert – Do You Want “Congregate Care”?

25 Feb

The Arc sends out periodic Action Alerts. I just got this one in my email inbox. Do you think the government should go back to segregated living and institutions for people with intellectual and developmental disabilities? Now is your chance to add your comments and be heard.

Do You Want “Congregate Care”?
Then now is the time to counter calls for institutions and other segregated settings

institution for people with intellectual and developmental disabilities. The Administration on Developmental Disabilities (ADD) has just extended the deadline for submitting testimony for its national listening sessions. And people who support institutions are wasting no time in letting ADD know what they want. In fact, VOR is calling on its membership to “Tell ADD to support Choice” in residential settings for people with intellectual and developmental disabilities.

Please take a minute to provide your comments to ADD and let them know that segregated, congregate living for people with disabilities should NOT be a choice. We know all too well that abuse, neglect and other forms of denigration are far more likely to occur in large congregate settings. Integrated, community based housing is the only policy the federal government should be supporting.

It’s critical that ADD hear from many people with intellectual and developmental disabilities or their family members. Please submit your comments before March 4 at:

Thank you in advance for your advocacy.

Work stress, burnout, and social and personal resources among direct care workers.

18 Feb

No surprise, people who have jobs caring for people with intellectual and developmental disabilities face a lot of stress. A recent paper has looked into what causes and alleviates the stress for these workers.

Work stress, burnout, and social and personal resources among direct care workers.

Gray-Stanley JA, Muramatsu N.

School of Nursing and Health Studies, Northern Illinois University, 253 Wirtz Hall, DeKalb, IL 60115, United States.

Work stress is endemic among direct care workers (DCWs) who serve people with intellectual and developmental disabilities. Social resources, such as work social support, and personal resources, such as an internal locus of control, may help DCWs perceive work overload and other work-related stressors as less threatening and galvanize them to cope more effectively to prevent burnout. However, little is known about what resources are effective for coping with what types of work stress. Thus, we examined how work stress and social and personal resources are associated with burnout for DCWs. We conducted a survey of DCWs (n=323) from five community-based organizations that provide residential, vocational, and personal care services for adults with intellectual and developmental disabilities. Participants completed a self-administered survey about their perceptions of work stress, work social support, locus of control, and burnout relative to their daily work routine. We conducted multiple regression analysis to test both the main and interaction effects of work stress and resources with respect to burnout. Work stress, specifically work overload, limited participation decision-making, and client disability care, was positively associated with burnout (p<.001). The association between work social support and burnout depended on the levels of work overload (p<.05), and the association between locus of control and burnout depended on the levels of work overload (p<.05) and participation in decision-making (p<.05). Whether work social support and locus of control make a difference depends on the kinds and the levels of work stressors. The findings underscore the importance of strong work-based social support networks and stress management resources for DCWs.

What adds to burnout? Work overload. Not being involved in decision making. Also, levels of client functioning, mobility, and intellectual abilities are a factor. If I read the paper correctly, levels of client functioning are a bigger factor than work overload.

Supervisor support and coworker support alleviated some of the stress and burnout.

The study concludes:

Policies or interventions developed as a result of this analysis might include strategies to foster work-based social support networks (i.e., team building efforts), as well as interventions to help workers develop personal stress management resources (Tierney, Quinlan, & Hastings, 2007). Successful protocols, once identified, can contribute to improved DCW job morale and ultimately better client care.

I don’t think stress and the sources of stress come as any great surprise. However, the more information available to make notions into supported facts, the better. If this can help caregivers and caregiver organizations support in reducing workload and adding methods to alleviate stress, so much the better for all. Especially the clients.