national(forum(for(neuroscience(in(special(education ... word - prematurity position statement.docx...

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CHIEF EXECUTIVE, Sue Williamson 5th Floor, 142 Central Street, London, EC1V 8AR T: 020 7802 2300 F: 020 7802 2345 E: [email protected] SSAT (The Schools Network) Ltd, A PRIVATE COMPANY LIMITED BY SHARES REGISTERED IN ENGLAND AND WALES, COMPANY NO. 8073410 National Forum for Neuroscience in Special Education STATEMENT ON THE EDUCATIONAL NEEDS OF CHILDREN BORN PRETERM This statement is a joint parent and professionalinstigated outcome from the National Forum for Neuroscience in Special Education’s Second Annual Conference: ‘The learning and neurodevelopmental needs of children born preterm – a conference to bridge thinking and understanding between education and neuroscience across the school years’ (Institute of Education, London, 31 January 2013). This Conference was given in partnership with Bliss, the special care baby charity, and generously funded by The Waterloo Foundation. Background With improving medical skill and knowledge, more children born premature 1 or with low birth weight 2 are surviving than ever before (Reijneveld et al., 2006), and greater numbers are arriving in our schools. Yet, the teachers in our schools do not have the information or tools to support their learning needs (Carpenter, 2013; Wolke, 2013). A survey by the University of Warwick (Henderson et al. 2012) found that although 89% of 120 teachers said they were likely to teach a child born prematurely, only 6% felt they had received sufficient training. Approximately 1 in 8 (80,000 per annum) children are born preterm in the UK every year (Medical Research Council, 2008). There are likely to be four children born preterm in every classroom, and two in every 100 children are born extremely preterm (Hornby and Woodward, 2009). In addition to neurodevelopmental impairments (e.g. visual, hearing and motor disabilities), premature birth can result in (Poehlmann et al, 2011; Wolke, 2010): Reduced cognitive capacity Social and behavioural difficulties Learning disabilities Poor academic outcomes, especially in the areas of mathematics and literacy. Pritchard et al. (2009) note: By middle childhood, children born very preterm (VPT) are 3 to 5 times more likely to show difficulties across a range of school based skills and educational domains… As a consequence, it is estimated that 60–70% of VPT children will require support from special education services by middle school age. (Pritchard et al., 2009) Even even children born premature who are unaffected by neurodevelopmental impairments and who have IQ within the normal range are at risk of poorer school performance than children born at term with a normal birth weight (Lee et al., 2011; Marlow, 2005). 1 Fullterm Over 37 weeks; Preterm Less than 37 weeks; Very preterm Less than 32 weeks; Extremely preterm – Less than 28 weeks 2 Normal birth weight (NBW) Greater than 2,500g; Low birth weight (LBW) Less than 2,500g; Very low birth weight (VLBW) Less than 1,500g; Extremely low birth weight (ELBW) Less than 1,000g

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Page 1: National(Forum(for(Neuroscience(in(Special(Education ... Word - Prematurity Position statement.docx Author Mat and Anna Carpenter Created Date 5/15/2013 7:07:52 PM

 

   

CHIEF  EXECUTIVE,  Sue  Williamson  5th  Floor,  142  Central  Street,  London,  EC1V  8AR  

T:  020  7802  2300  F:  020  7802  2345  E:  [email protected]  

                                                                                                                                       SSAT  (The  Schools  Network)  Ltd,  A  PRIVATE  COMPANY  LIMITED  BY  SHARES  REGISTERED  IN  ENGLAND  AND  WALES,  COMPANY  NO.  8073410  

National  Forum  for  Neuroscience  in  Special  Education    

STATEMENT  ON  THE  EDUCATIONAL  NEEDS  OF  CHILDREN  BORN  PRETERM  

 This  statement  is  a  joint  parent-­‐  and  professional-­‐instigated  outcome  from  the  National  Forum  for  Neuroscience  in  Special  Education’s  Second  Annual  Conference:  ‘The  learning  and  neurodevelopmental  needs  of  children  born  pre-­‐term  –  a  conference  to  bridge  thinking  and  understanding  between  education  and  neuroscience  across  the  school  years’  (Institute  of  Education,  London,  31  January  2013).  This  Conference  was  given  in  partnership  with  Bliss,  the  special  care  baby  charity,  and  generously  funded  by  The  Waterloo  Foundation.      Background  With  improving  medical  skill  and  knowledge,  more  children  born  premature1  or  with  low  birth  weight2  are  surviving  than  ever  before  (Reijneveld  et  al.,  2006),  and  greater  numbers  are  arriving  in  our  schools.  Yet,  the  teachers  in  our  schools  do  not  have  the  information  or  tools  to  support  their  learning  needs  (Carpenter,  2013;  Wolke,  2013).  A  survey  by  the  University  of  Warwick  (Henderson  et  al.  2012)  found  that  although  89%  of  120  teachers  said  they  were  likely  to  teach  a  child  born  prematurely,  only  6%  felt  they  had  received  sufficient  training.    Approximately  1  in  8  (80,000  per  annum)  children  are  born  preterm  in  the  UK  every  year  (Medical  Research  Council,  2008).  There  are  likely  to  be  four  children  born  preterm  in  every  classroom,  and  two  in  every  100  children  are  born  extremely  preterm  (Hornby  and  Woodward,  2009).    In  addition  to  neurodevelopmental  impairments  (e.g.  visual,  hearing  and  motor  disabilities),  premature  birth  can  result  in  (Poehlmann  et  al,  2011;  Wolke,  2010):      • Reduced  cognitive  capacity    • Social  and  behavioural  difficulties    • Learning  disabilities    • Poor  academic  outcomes,  especially  in  the  areas  of  mathematics  and  literacy.    Pritchard  et  al.  (2009)  note:    

By  middle  childhood,  children  born  very  preterm  (VPT)  are  3  to  5  times  more  likely  to  show  difficulties  across  a  range  of  school  based  skills  and  educational  domains…  As  a  consequence,  it  is  estimated  that  60–70%  of  VPT  children  will  require  support  from  special  education  services  by  middle  school  age.  (Pritchard  et  al.,  2009)  

 Even  even  children  born  premature  who  are  unaffected  by  neurodevelopmental  impairments  and  who  have  IQ  within  the  normal  range  are  at  risk  of  poorer  school  performance  than  children  born  at  term  with  a  normal  birth  weight  (Lee  et  al.,  2011;  Marlow,  2005).      

                                                                                                                         1  Full-­‐term  -­‐  Over  37  weeks;  Preterm  -­‐  Less  than  37  weeks;  Very  preterm    -­‐  Less  than  32  weeks;  Extremely  preterm  –  Less  than  28  weeks  2  Normal  birth  weight  (NBW)  -­‐  Greater  than  2,500g;  Low  birth  weight  (LBW)  -­‐  Less  than  2,500g;  Very  low  birth  weight  (VLBW)  -­‐  Less  than  1,500g;  Extremely  low  birth  weight  (ELBW)  -­‐  Less  than  1,000g  

Page 2: National(Forum(for(Neuroscience(in(Special(Education ... Word - Prematurity Position statement.docx Author Mat and Anna Carpenter Created Date 5/15/2013 7:07:52 PM

 

   

CHIEF  EXECUTIVE,  Sue  Williamson  5th  Floor,  142  Central  Street,  London,  EC1V  8AR  

T:  020  7802  2300  F:  020  7802  2345  E:  [email protected]  

                                                                                                                                       SSAT  (The  Schools  Network)  Ltd,  A  PRIVATE  COMPANY  LIMITED  BY  SHARES  REGISTERED  IN  ENGLAND  AND  WALES,  COMPANY  NO.  8073410  

Sensitive  and  responsive  parenting  and  teaching  can  ameliorate  disadvantages.  However,  children’s  difficulties  are  often  ‘invisible’  to  educators  who  lack  the  information  and  training  to  recognise  them.  Lack  of  support  in  childhood  has  been  linked  with  detrimental  life  outcomes  for  young  people  born  preterm  –  school  underachievement,  unemployment,  poor  social  and  psychological  well  being  (Woythaler  et  al.,  2011).      Although  incidence  of  neurodevelopmental  disabilities,  such  as  sensory  impairment  and  cerebral  palsy  is  falling,  the  levels  of  cognitive,  social  and  behavioural  impacts  remain  largely  unchanged  (Wolke,  2013).  These  learning  problems  persist  throughout  childhood  and  adolescence,  therefore  cannot  be  explained  solely  by  developmental  delay  (Anderson  et  al.,  2004;  Kierkegaard  et  al.,  2006).    With  Department  for  Education  support  and  guidance,  schools  need  to:    • Raise  educator  knowledge  and  understanding    of  the  potential  difficulties  of  children  and  young  

people  born  preterm,  and  of  the  need  for  proactive  educational  responses  • Promote  best  outcomes  for  children  born  preterm  and  their  families.      Preterm  birth  –  Educational  risk    Premature  birth  may  result  in  smaller  brain  volume,  which  impacts  on  verbal  and  performance  IQ  scores  at  school  age  and  is  associated  with  poorer  neurodevelopmental  outcomes  in  adolescence.  (Skiold,  2011).  The  longitudinal  Epicure  study  (Marlow  et  al.,  2005),  following  all  children  born  premature  in  1995,  found  that  of  those  surviving  at  age  6  years,  32%  of  had  mild  disabilities,  24%  had  moderate  disabilities  and  22  %  had  severe  disabilities  (Johnson  et  al.,  2009).      The  Epicure  study  has  identified  a  clear  phenotype  for  very  and  extremely  preterm  children  (Wolke,  2010)  which  carries  increased  risk  of:    • Pervasive  cognitive  processing  difficulties  • Learning  problems:  reading  and  maths  • Educational  problems  and  high  special  education  resource  needs  • High  service  costs.    At  11  years,  extremely  preterm  children  continue  to  have  much  poorer  school  performance  and  a  high  level  of  special  educational  needs,  including  (Johnson  et  al.,  2009):    • Need  for  additional  support  (in  mainstream  schools  -­‐  £53%;  in  special  schools  –  13%)  • Serious  impairment  in  maths  (44%)  • Serious  impairment  in  reading  (25%).      Nosarti  et  al  (2012)  have  also    identified  significant  executive  function  difficulties  in  young  adulthood.  These  difficulties  can  intensify  with  age  associated  with  increasing  educational  support  needs  (Reijneveld  et  al.,  2006;  Wolke,  2010).      Preterm  birth  –  Social  and  emotional  risk  Children  born  very  or  extremely  preterm  are  50%  more  likely  than  their  full-­‐term  peers  to  have  behaviour  difficulties  in  the  clinical  range,  both  at  preschool  and  school  ages  (Reijneveld  et  al.,  

Page 3: National(Forum(for(Neuroscience(in(Special(Education ... Word - Prematurity Position statement.docx Author Mat and Anna Carpenter Created Date 5/15/2013 7:07:52 PM

 

   

CHIEF  EXECUTIVE,  Sue  Williamson  5th  Floor,  142  Central  Street,  London,  EC1V  8AR  

T:  020  7802  2300  F:  020  7802  2345  E:  [email protected]  

                                                                                                                                       SSAT  (The  Schools  Network)  Ltd,  A  PRIVATE  COMPANY  LIMITED  BY  SHARES  REGISTERED  IN  ENGLAND  AND  WALES,  COMPANY  NO.  8073410  

2006).  They  are  also  at  increased  risk  of  developing  social  and  emotional  problems  (Elgen  et  al.,  2012;  Reijneveld  et  al.,  2006;  Skiöld,  2011;  Wolke,  2010)  including  significantly  more  symptoms  of:  

 • ADHD  (inattention  type)  • Autistic  spectrum  symptoms  

• Social  phobia/peer  interaction  • Depression/anxiety  • Emotional/conduct  disorders  or  problems.    

 Young  people  born  at  32  to  36  weeks’  gestation  are  also  at  greater  risk  than  full-­‐term  peers  for  development  of  mental  health  issues  (Nosarti  et  al.,  2012):    

 • Psychosis:  1.6  times  more  likely  (below  32  weeks,  2.5  times  more  likely)  • Depressive  disorder:  1.3  times  more  likely  (below  32  weeks,  2.9  times  more  likely)  

• Bipolar:  2.7  times  more  likely  (below  32  weeks,  7.4  times  more  likely).        It  is  likely  that,  as  children  get  older,  behavioural  and  emotional  problems  may  affect  academic  functioning  (Reijneveld  et  al.,  2006;  Wolke,  2010).      Call  to  action  Professionals  agree  that,  In  order  to  divert  bleak  outcomes  for  children  born  preterm,  ‘it  is  imperative  that  their  health  and  educational  needs  are  identified  and  resources  are  committed  to  address  their  needs’  (Mandy,  2011).      They  suggest  the  following  provisions  to  support  the  child’s  education  (Anderson  et  al.,  2004;  Carpenter,  2013;  Hack  et  al.,  2005;  Munck,  2012;  Nosarti  et  al.,  2012;  Reijneveld  et  al.,  2006;  Tutt  et  al.,  2012):      • School-­‐held  developmental  record  of  the  child  • Appropriate  personalised  decisions  on  school  entry  (e.g.  consideration  of  deferred/delayed  

school  entry)  • Regular  cognitive/social/emotional  assessment  of  children  born  preterm  to  allow  early  

identification  and  intervention  of  educational  need,  and  long-­‐term  follow  up  • Targeted,  personalised  educational  assistance  to  overcome  learning  barriers  (e.g.  attention,  

executive  function  issues,  etc.)  to  enable  the  young  person  to  achieve  their  potential  • Development  of  interdisciplinary,  evidence-­‐based  education  pathways  • Support,  guidance  and  involvement  of  families  • Continuing  professional  development  to  enable  staff  to  recognise  and  respond  proactively  to  the  

learning  difficulties  and  disabilities  associated  with  premature  birth  • Support  for  educational  research  to  improve  life  chances  for  these  children.      Conclusion    Educator  knowledge  and  awareness  are  key  to  the  diagnosis,  assessment  and  successful  intervention  of  young  people  born  preterm.  This  needs  targeted  support  and  guidance  around  educational  provision  for  this  very  vulnerable  group  of  children  to  ensure  their  positive  life  outcomes.      

Page 4: National(Forum(for(Neuroscience(in(Special(Education ... Word - Prematurity Position statement.docx Author Mat and Anna Carpenter Created Date 5/15/2013 7:07:52 PM

 

   

CHIEF  EXECUTIVE,  Sue  Williamson  5th  Floor,  142  Central  Street,  London,  EC1V  8AR  

T:  020  7802  2300  F:  020  7802  2345  E:  [email protected]  

                                                                                                                                       SSAT  (The  Schools  Network)  Ltd,  A  PRIVATE  COMPANY  LIMITED  BY  SHARES  REGISTERED  IN  ENGLAND  AND  WALES,  COMPANY  NO.  8073410  

The  facts  in  this  statement  are  corroborated  by  research  carried  out  in  countries  around  the  world,  including  in  UK  and  Ireland,  Canada,  France,  New  Zealand,  Sweden  and  the  USA  among  many  others.        References  Anderson,  P.J.,  Doyle,  L.W.  and  the  Victorian  Infant  Collaborative  Study  Group  (2004)  ‘Executive  

functioning  in  school-­‐aged  children  who  were  born  very  preterm  or  with  extremely  low  birth  weight  in  the  1990s’,  NeoReviews,  114  (1),  50-­‐57.  

Carpenter,  B.  (2013)  ‘The  emerging  new  SENs  of  students  born  prematurely’,  SecEd  Magazine,  10.1.13  [Online  at:  http://www.sec-­‐ed.co.uk/best-­‐practice/the-­‐emerging-­‐new-­‐sens-­‐of-­‐students-­‐born-­‐prematurely/;  accessed:  13.5.13]  

Elgen,  S.K.,  Leversen,  K.T.,  Grundt,  J.H.,  Hurum,  J.,  Sundby,  A.B.,  Elgen,  I.B.  and  Markestad,  T.  (2012)  ‘Mental  health  at  5  years  among  children  born  extremely  preterm:  a  national  population-­‐based  study’,  European  Child  and  Adolescent  Psychiatry,  21  (10),  583-­‐589.  

Hack.  M.,  Taylor,  H.G.,  Drotar,  D.,  Schluchter,  M.,  Cartar,  L.,  Andreias,  L.,  Wilson-­‐Costello,  D.  and  Klein,  N.  (2005)  ‘Chronic  conditions,  functional  limitations,  and  special  health  care  needs  of  school-­‐aged  children  born  with  extremely  low-­‐birth-­‐weight  in  the  1990s’,  Journal  of  the  American  Medical  Association,  294  (3),  318-­‐325.  

Henderson,  D.,  Beer,  C.,  Wolke,  D.  and  Johnson,  S.  (2012)  ‘Supporting  the  schooling  of  very  preterm  children:  education  professionals’  opinions  and  information  needs’  (abstract),  Archives  of  Diseases  in  Childhood,  97  (Suppl  2).    

Hornby,  G.  and  Woodard,  L.J.  (2009)  ‘Educational  needs  of  school-­‐aged  children  born  very  and  extremely  preterm:  a  review’,  Educational  Psychology  Review,  21  (3),  247–266.  

Kirkegaard,  I.,  Obel,  C.,  Hedegaard,  M.  and  Henriksen,  T.B.  (2006)  ‘Gestational  age  and  birth  weight  in  relation  to  school  performance  of  10-­‐year-­‐old  children:  a  follow-­‐up  study  of  children  born  

after  32  completed  weeks’,  Pediatrics,  118  (4),  1600-­‐1606.  Lee,  E.S.,  Yeatman,  J.D.,  Luna,  B.  and  Feldman,  H.M.  (2011)  ‘Specific  language  and  reading  skills  in  

school-­‐aged  children  and  adolescents  are  associated  with  prematurity  after  controlling  for  IQ’,  Neuropsychologia,  49  (5),  906–913.    

Mandy,  G.T.  (2011)  ‘Long-­‐term  complications  of  the  premature  infant’.  In:  O.  Battisti  (2011)  Prematurity  and  Brain.  [Online  at:  http://orbi.ulg.ac.be/bitstream/2268/114039/2/battisti_prematurity_brain_lungs.pdf;  accessed:  14.4.13]  

Medical  Research  Council  (2008)  ‘New  data  to  inform  clinical  practice  around  preterm  labour’  (Medical  Research  Council  Media  Release).  [Online  at:  http://multimedia.thelancet.com/pdf/ORACLE/MRC-­‐press.pdf;  accessed:  2.4.13]  

Johnson,  S.,  Fawke,  J.,  Hennessy,  E.,  Rowell,  V.,  Thomas,  S.,  Wolke,  D.,  et  al.  (2009)  ‘Neurodevelopmental  disability  through  11  years  of  age  in  children  born  before  26  weeks  of  gestation’,  Pediatrics,  124  (2),  e249-­‐e257.  

Kirkegaard,  I.,  Obel,  C.,  Hedegaard,  M.  and  Henriksen,  T.B.  (2006)  ‘Gestational  age  and  birth  weight  

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CHIEF  EXECUTIVE,  Sue  Williamson  5th  Floor,  142  Central  Street,  London,  EC1V  8AR  

T:  020  7802  2300  F:  020  7802  2345  E:  [email protected]  

                                                                                                                                       SSAT  (The  Schools  Network)  Ltd,  A  PRIVATE  COMPANY  LIMITED  BY  SHARES  REGISTERED  IN  ENGLAND  AND  WALES,  COMPANY  NO.  8073410  

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Wolke,  D.  (2013)  ‘Pre-­‐term  birth:  the  implications  for  learning’.  Presentation  to  the  National  Forum  for  Neuroscience  in  Special  Education’s  Second  Annual  Conference:  ‘The  learning  and  neurodevelopmental  needs  of  children  born  pre-­‐term  –  a  conference  to  bridge  thinking  and  understanding  between  education  and  neuroscience  across  the  school  years’,  Institute  of  Education,  London  (31  January).  

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