At last!! the Minnesota State Dept of Education finally hired a Low Incidence Specialist, who is the director of all the programs that affect our kids with chronic health problems. She was just hired in late January. Sickle Cell Disease is apparently is at the top of her list! She is setting up a small group to rewrite the state guidelines and fact sgheet on sickle cell disease, and has invited our advocate extraodinare, Karen Wills, PhD, to join that group.
These “fact sheets” guide all the decision-making by MN educators, school psychologists and school nurses about educational needs of kids with sickle cell disease — AND there will be similar “fact sheets” being rewritten, through the Low Incidence office, for kids with CANCER, CYSTIC FIBROSIS, HEART DISEASE, SPINA BIFIDA, or any other chronic medical condition that may impact learning. So for nearly all of our Children’s Hospital kids in the MN State public schools, this is a great opportunity for us at Children’s to put in our $.02 to guide what happens to the kids educationally.