The State of Children With Disabilities and Special Health Care Needs

Posted August 9, 2023
By the Annie E. Casey Foundation
A young girl of color communicates using sign language

Chil­dren and youth with dis­abil­i­ties are a high­ly diverse group rep­re­sent­ing many con­di­tions and iden­ti­ties — from learn­ing dis­abil­i­ties and emo­tion­al and behav­ioral diag­noses to spe­cial health care needs. These young peo­ple con­tribute in pos­i­tive ways to their fam­i­lies, schools, com­mu­ni­ties and even­tu­al­ly — in adult­hood — to their employ­ers. At the same time, these chil­dren are also more like­ly to expe­ri­ence chal­lenges social­ly, emo­tion­al­ly, aca­d­e­m­i­cal­ly and in oth­er areas. In turn, the adults in their lives are more like­ly to expe­ri­ences stress relat­ed to their careers, fam­i­ly finances and care­giv­ing duties.

This post explores the expe­ri­ences of chil­dren who have dis­abil­i­ties or spe­cial health care needs and exam­ines how they are sup­port­ed and where cur­rent approach­es may be falling short.

Chil­dren With Spe­cial Health Care Needs

In 20192020, 19% of kids liv­ing in the Unit­ed States — more than 14 mil­lion chil­dren total — had spe­cial health care needs, accord­ing to a 2022 sum­ma­ry of the Mater­nal and Child Health Bureau’s Nation­al Sur­vey of Children’s Health. Chil­dren with­in this group are more like­ly to expe­ri­ence chron­ic phys­i­cal, devel­op­men­tal, behav­ioral or emo­tion­al con­di­tions and require added care and ser­vices. The same sur­vey also found that: 

  • Close to 30% of U.S. house­holds with chil­dren have at least one child with a spe­cial health care need.
  • Spe­cial health care needs are more com­mon among chil­dren who live in pover­ty and rely on pub­lic health insur­ance when com­pared to chil­dren with­out such needs.
  • Among kids ages 3 to 17 with spe­cial health care needs, more than half (56%) have a cur­rent men­tal health or behav­ioral diag­no­sis, such as ADHD, depres­sion or anxiety.

Stu­dents With Disabilities

In the U.S. pub­lic school sys­tem in 202122, more than 7 mil­lion stu­dents ages 3 to 21 received spe­cial edu­ca­tion ser­vices for dis­abil­i­ties, accord­ing to the Nation­al Cen­ter for Edu­ca­tion Sta­tis­tics. Since 2010-11, this total has increased by near­ly one mil­lion stu­dents and jumped from rep­re­sent­ing 13% to 15% of the total pub­lic school stu­dent population. 

The most preva­lent dis­abil­i­ties among stu­dents receiv­ing spe­cial edu­ca­tion ser­vices in 202122 were: 

  • spe­cif­ic learn­ing dis­abil­i­ties (32%);
  • speech or lan­guage impair­ments (19%);
  • oth­er health impair­ments — a cat­e­go­ry that includes con­di­tions like asth­ma, dia­betes and epilep­sy (15%); and
  • autism (12%).

Oth­er less com­mon dis­abil­i­ties include devel­op­men­tal delays, intel­lec­tu­al dis­abil­i­ties, emo­tion­al dis­tur­bances, mul­ti­ple dis­abil­i­ties, hear­ing impair­ments, ortho­pe­dic impair­ments, visu­al impair­ments, trau­mat­ic brain injuries and deaf-blindness.

Dis­par­i­ties by race and eth­nic­i­ty exist in the 202122 dataset:

  • The share of U.S. stu­dents receiv­ing spe­cial edu­ca­tion for dis­abil­i­ties was high­est for Amer­i­can Indi­an or Alas­ka Native (19%) and Black (17%) students.
  • Among all spe­cial edu­ca­tion stu­dents ages 14 to 21 who exit­ed school in 202021, 75% grad­u­at­ed with a reg­u­lar high school diplo­ma. This out­come was less like­ly for Amer­i­can Indi­an or Alas­ka Native (69%), Black (71%), Lati­no or His­pan­ic (72%) and Pacif­ic Islander (72%) stu­dents as well as stu­dents of mul­ti­ple racial back­grounds (74%).

These find­ings indi­cate that chil­dren and youth of col­or who have dis­abil­i­ties are expe­ri­enc­ing greater hur­dles to aca­d­e­m­ic suc­cess. Pol­i­cy­mak­ers, schools, com­mu­ni­ty part­ners, fun­ders and oth­er stake­hold­ers must look to strength­en sup­port for these chil­dren to ensure that that they have equi­table oppor­tu­ni­ties to thrive.

Where the Sys­tem of Care Falls Short

Chil­dren, youth and fam­i­lies who expe­ri­ence spe­cial health care needs face too many bar­ri­ers to med­ical care and sup­port ser­vices. Con­sid­er the fol­low­ing from the Nation­al Sur­vey of Children’s Health:

  • Chil­dren and youth in this cat­e­go­ry were near­ly four times as like­ly to have unmet care needs when com­pared to their peers.
  • The most com­mon rea­sons for unmet needs were relat­ed to cost and appoint­ment availability.
  • Few­er than 2 in 3 kids with spe­cial needs had ade­quate health insur­ance to cov­er the ser­vices needed.
  • Few­er than one in four youth with spe­cial needs, ages 12 to 17, received tran­si­tion plan­ning ser­vices for adult health care.

Over­all, more than 4 in 5 chil­dren and youth with spe­cial needs — 85% of the pop­u­la­tion in focus — were not receiv­ing ser­vices in a well-func­tion­ing sys­tem of care. Such a sys­tem should include the fol­low­ing com­po­nents, accord­ing to the fed­er­al Mater­nal and Child Health Bureau:

  • Chil­dren are screened ear­ly and con­tin­u­ous­ly for spe­cial health care needs.
  • Fam­i­lies are part­ners in decision-making.
  • Com­mu­ni­ty-based ser­vices are orga­nized so fam­i­lies can use them easily.
  • Chil­dren and youth with spe­cial health care needs receive care in a med­ical home.
  • Insur­ance and fund­ing are ade­quate to cov­er services.
  • Youth with spe­cial health care needs receive ser­vices nec­es­sary to make tran­si­tions to adult health care.

Improv­ing Out­comes for Chil­dren With Chron­ic Conditions

In response to these find­ings, the Mater­nal and Child Health Bureau — in part­ner­ship with experts, fam­i­lies and oth­ers — has released a nation­al Blue­print for Change that envi­sions an improved sys­tem of ser­vices for chil­dren and youth. The pub­li­ca­tion describes next steps and strate­gies designed to help all chil­dren and youth with spe­cial health care needs thrive from child­hood through adult­hood. It focus­es on four crit­i­cal areas:

  1. equi­ty;
  2. qual­i­ty of life;
  3. access to ser­vices; and
  4. financ­ing of services.

Resources on Sup­port­ing Chil­dren With Dis­abil­i­ties and Spe­cial Needs

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