Service support to people in Wales with severe intellectual disability and the most severe challenging behaviours: processes, outcomes and costs

2002 ◽  
Vol 42 (5) ◽  
pp. 390-408 ◽  
Author(s):  
D. Felce ◽  
K. Lowe ◽  
J. Perry ◽  
H. Baxter ◽  
E. Jonesna ◽  
...  
2013 ◽  
Vol 68 (3) ◽  
pp. 191-193 ◽  
Author(s):  
Joep de Ligt ◽  
Marjolein H. Willemsen ◽  
Bregje W. M. van Bon ◽  
Tjitske Kleefstra ◽  
Helger G. Yntema ◽  
...  

2001 ◽  
Vol 45 (5) ◽  
pp. 407-415 ◽  
Author(s):  
C. Sheard ◽  
J. Clegg ◽  
P. Standen ◽  
J. Cromby

1992 ◽  
Vol 36 (3) ◽  
pp. 318-327 ◽  
Author(s):  
Carolyn Grbich ◽  
Stewart Sykes

The area of severe intellectual disability has received little attention in Australian research. This Victorian study examined the issue of access to curricula in post primary school and special school placements for a group of students with severe intellectual disability. Results from the investigation indicated: that parents were generally dissatisfied with the lack of choice available regarding educational placements and the lack of opportunity for them to contribute in a supportive manner to their daughter's/son's schooling: that teachers in post primary schools reported an urgent need for special training or for specialised staff to assist them with curricular modification: and that the female students in this group experienced disadvantage in several curricular areas.


2021 ◽  
pp. 174462952110327
Author(s):  
Anne L Marks ◽  
Natasha Mahoney ◽  
Yu-Wei Chen ◽  
Reinie Cordier ◽  
Angus Buchanan ◽  
...  

Background: Self-management of type 1 diabetes mellitus (T1DM) can be challenging for people with intellectual disability. Often, parents provide health support due to lack of appropriate services outside the home. The study aim was to identify barriers and facilitators to T1DM self-management for young adults with intellectual disability and the implications for health promotion. Methods: Five male participants with intellectual disability, aged 17–26 years, and seven parents were interviewed between October 2017 and February 2019. Interview data were descriptively analysed. Findings: Two categories for barriers and facilitators were identified: 1) Diabetes self-management is complex (carbohydrate counting, blood glucose level monitoring, insulin therapy); 2) support for diabetes care (reliance on parents and carers, the National Disability Insurance Scheme, mainstream diabetes service support). Conclusions: Parents are critical for the support of people with intellectual disability and T1DM in the absence of disability staff with appropriate health skills.


Author(s):  
J Fonseca ◽  
C Melo ◽  
C Ferreira ◽  
M Sampaio ◽  
R Sousa ◽  
...  

AbstractEarly infantile epileptic encephalopathy-64 (EIEE 64), also called RHOBTB2-related developmental and epileptic encephalopathy (DEE), is caused by heterozygous pathogenic variants (EIEE 64; MIM#618004) in the Rho-related BTB domain-containing protein 2 (RHOBTB2) gene. To date, only 13 cases with RHOBTB2-related DEE have been reported. We add to the literature the 14th case of EIEE 64, identified by whole exome sequencing, caused by a heterozygous pathogenic variant in RHOBTB2 (c.1531C > T), p.Arg511Trp. This additional case supports the main features of RHOBTB2-related DEE: infantile-onset seizures, severe intellectual disability, impaired motor functions, postnatal microcephaly, recurrent status epilepticus, and hemiparesis after seizures.


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