The State of Children With Disabilities and Special Health Care Needs

July is Dis­abil­i­ty Pride Month, mark­ing the anniver­sary of the Amer­i­cans with Dis­abil­i­ties Act. This ground­break­ing civ­il rights law was passed in July 1990 and pro­hibits dis­crim­i­na­tion against indi­vid­u­als with dis­abil­i­ties. This anniver­sary is an oppor­tu­ni­ty to hon­or peo­ple with dis­abil­i­ties as a val­ued part of our soci­ety — we can do this through­out the year, as well. This is also an oppor­tune time to review the expe­ri­ences of young peo­ple with dis­abil­i­ties and spe­cial health care needs in our coun­try and con­sid­er how to strength­en the sup­port they receive.

Chil­dren and youth with dis­abil­i­ties are a high­ly diverse group rep­re­sent­ing many con­di­tions and iden­ti­ties — from learn­ing dis­abil­i­ties and men­tal 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 soci­ety through their work. At the same time, these chil­dren are also more like­ly to expe­ri­ence chal­lenges social­ly, emo­tion­al­ly, aca­d­e­m­i­cal­ly and in oth­er areas, com­pared to chil­dren with­out dis­abil­i­ties or spe­cial health care needs. In turn, their par­ents or care­givers expe­ri­ence stress relat­ed to their fam­i­ly finances and care­giv­ing duties.

This post pro­vides the lat­est sta­tis­tics on 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

One in five (20%) kids liv­ing in the Unit­ed States — more than 14.5 mil­lion chil­dren total — has spe­cial health care needs, accord­ing to the Nation­al Sur­vey of Children’s Health. Chil­dren with­in this group are more like­ly to expe­ri­ence chron­ic phys­i­cal, devel­op­men­tal, behav­ioral or emo­tion­al con­di­tions and require more care and ser­vices than chil­dren gen­er­al­ly. This sur­vey found that, among chil­dren and youth with spe­cial health care needs:

• Three in five have men­tal or behav­ioral diag­noses: A major­i­ty (61%) of those ages 3 to 17 have a cur­rent men­tal health or behav­ioral diag­no­sis, such as ADHD, depres­sion or anxiety.
• About one in three are flour­ish­ing: Only 35% of those ages 6 to 17 are flour­ish­ing — based on mea­sures of resilience, self-reg­u­la­tion and curios­i­ty about learning—approximately half the share of those with­out spe­cial needs (69%).
• Only one in four are con­sis­tent­ly engaged in school: Sim­i­lar to above, the rate of school engage­ment (based on car­ing about doing well in school and doing home­work) for these young peo­ple is about half that of kids with­out spe­cial needs: 26% vs. 49%, respectively.

Among par­ents and fam­i­lies of chil­dren with spe­cial health care needs, the sur­vey found that:

• Few­er than half of moth­ers are in good health: Only 44% of moth­ers and 52% of fathers who are care­giv­ing for kids with spe­cial health care needs report being in excel­lent or very good phys­i­cal and men­tal health, com­pared to 63% of moth­ers and 67% of fathers who do not have kids with spe­cial needs.

• These fam­i­lies have more dif­fi­cul­ty meet­ing basic needs: Mul­ti­ple sur­vey find­ings under­score this point. For instance, rates of house­hold food insuf­fi­cien­cy are high­er among chil­dren with spe­cial health care needs com­pared to those with­out: 42% vs 31%. Addi­tion­al­ly, rates of med­ical hard­ship (prob­lems pay­ing for the child’s med­ical expens­es) are high­er for kids with spe­cial needs than those with­out: 16% vs. 7%.

See state-lev­el preva­lence of chil­dren with spe­cial health care needs and kids with one or more emo­tion­al, behav­ioral, or devel­op­men­tal con­di­tions from the KIDS COUNT Data Center.

Stu­dents With Disabilities

In the U.S. pub­lic school sys­tem, 7.5 mil­lion stu­dents ages 3 to 21 received spe­cial edu­ca­tion ser­vices for dis­abil­i­ties in 2022–23, accord­ing to the Nation­al Cen­ter for Edu­ca­tion Sta­tis­tics. This rep­re­sents 15% of all pub­lic school stu­dents, an increase from 13% a decade ago in 2012–13.

The most preva­lent dis­abil­i­ties among stu­dents receiv­ing spe­cial edu­ca­tion ser­vices in 2022–23 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 (13%).

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 among these stu­dents have exist­ed for years. Accord­ing to 2022–23 data:

• The share of U.S. stu­dents receiv­ing spe­cial edu­ca­tion for dis­abil­i­ties was high­est for Amer­i­can Indi­an or Alas­ka Native (19%) and Black (17%) stu­dents and low­est for Pacif­ic Islander (12%) and Asian (8%) students.
• Among all spe­cial edu­ca­tion stu­dents ages 14 to 21 who exit­ed school in 2021–22, 74% grad­u­at­ed with a reg­u­lar high school diplo­ma. This out­come was less like­ly for Black (68%), Amer­i­can Indi­an or Alas­ka Native (69%), Pacif­ic Islander (71%), Lati­no (73%) and mul­tira­cial (73%) stu­dents. White and Asian stu­dents were more like­ly to reach this out­come (77% and 78%, respectively).

These find­ings indi­cate that most chil­dren and youth of col­or who have dis­abil­i­ties are expe­ri­enc­ing greater hur­dles to high school grad­u­a­tion. 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 health care and sup­port ser­vices. Con­sid­er the fol­low­ing from the Nation­al Sur­vey of Children’s Health:

• Chil­dren and youth with these needs are more than four times as like­ly to have unmet care needs when com­pared to their peers (9% vs 2%).
• The most com­mon rea­sons for unmet needs were relat­ed to cost and appoint­ment availability.
• Only two in three (67%) kids with spe­cial needs have ade­quate health insur­ance to meet their needs, com­pared to 76% of their peers.
• Few­er than one in four (22%) youth with spe­cial needs, ages 12 to 17, receives tran­si­tion plan­ning ser­vices for adult health care.

Over­all, near­ly nine in 10 chil­dren and youth with spe­cial health care needs — 87% of the pop­u­la­tion in focus — are 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, mea­sured by the receipt of pre­ven­tive med­ical and den­tal care.
• Fam­i­lies are part­ners in deci­sion-mak­ing and their child’s care.
• Com­mu­ni­ty-based ser­vices are orga­nized so fam­i­lies can use them eas­i­ly, mea­sured by chil­dren hav­ing no unmet needs or bar­ri­ers to services.
• Chil­dren receive care in a med­ical home.
• Insur­ance and fund­ing are ade­quate to cov­er services.
• Youth with spe­cial health care needs receive ser­vices nec­es­sary to tran­si­tion 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. This 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: Address­ing sys­temic caus­es of health inequities, such as pover­ty and dis­crim­i­na­tion, and ensur­ing that sys­tems and ser­vices are designed to reduce disparities.
2. Qual­i­ty of life: Pri­or­i­tiz­ing pos­i­tive life out­comes by pro­vid­ing ​“high-qual­i­ty, afford­able, com­mu­ni­ty-based ser­vices that sup­port the med­ical, behav­ioral, social, and emo­tion­al well-being of the child or youth and whole family.”
3. Access to ser­vices: Ensur­ing time­ly access to all need­ed ser­vices where fam­i­lies need them (e.g., home, school or com­mu­ni­ty set­tings) in a way that is easy to nav­i­gate, inte­grat­ed and affordable.
4. Financ­ing of ser­vices: Strength­en­ing cur­rent financ­ing, insur­ance and pay­ment sys­tems so that they pri­or­i­tize child and fam­i­ly well-being, equi­ty, afford­abil­i­ty, access to care, qual­i­ty of care and com­pre­hen­sive, inte­grat­ed services.

More Resources on Sup­port­ing Chil­dren With Dis­abil­i­ties and Spe­cial Needs

• Nation­al Cen­ter for a Sys­tem of Ser­vices for Chil­dren and Youth with Spe­cial Health Care Needs, Amer­i­can Acad­e­my of Pediatrics
  
• Stu­dents with Dis­abil­i­ties Data Sum­ma­ry, Nation­al Cen­ter for Edu­ca­tion Statistics
• Sup­port for Fam­i­lies of Chil­dren with Dis­abil­i­ties
• Fam­i­ly Voic­es sup­port net­work
  
• Nation­al Cen­ter for Learn­ing Dis­abil­i­ties
• The Cat­a­lyst Center
• Nation­al Acad­e­my for State Health Pol­i­cy: Chil­dren and Youth with Spe­cial Health Care Needs

See data on chil­dren with spe­cial health care needs in the KIDS COUNT Data Center:

• Chil­dren with spe­cial health care needs, by state
• Chil­dren who have one or more emo­tion­al, behav­ioral, or devel­op­men­tal con­di­tions, by state

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