It’s not your imagination
Family caregivers may have noticed that it’s harder to get services for their children with special needs in some cases. A recent study conducted by the Council for Exceptional Children in collaboration with the National Coalition of Personnel Shortages in Special Education and Related Services, indicated that “94% of respondents say that districts feel the impact; 82% cite too few personnel to deliver services.” The study found that budget cuts have caused layoffs of 1/3 of personnel, and positions that become vacant are not refilled. Other concerns cited were that 83% of respondents state that budget cuts have already impacted the delivery of special education services, increased caseloads, and resulted in larger class sizes. 61% of respondents are in high poverty districts and have Title I funding.
First, the bad news
It’s not just special education cuts that affect children with special needs. Cuts have been made to other areas such as healthcare, human services etc. So access to medical and mental health care have been affected, as well as family support programs. Family support could include respite, assistive technology, home modification, and other services for individuals with disabilities. As an advocate, I’ve never written as much testimony on special education, family support, healthcare/mental health, as I have in the past 2 or 3 years, all aimed at highlighting the challenges that would be faced by families if yet another program cut were to materialize.
And now for some good news
But it’s not all bad news. There have been innovations in some of these areas as well.
Ø Although there was accountability for special education for the first time under No Child Left Behind (e.g. having highly qualified teachers in content areas, not just special education), there was concern that some children hadn’t been exposed to the curriculum on which they were being tested, or had behavioral issues that would interfere with accurate scoring of their abilities. Now states are adopting the Common Core Standards which concentrate on college and career readiness. Under NCLB, academic progress was made both by children with disabilities and typically developing peers due to the use of differentiated instructional techniques. Advocates hope that this continues and that the Common Core takes into consideration the special needs of children with disabilities both in instruction and in assessment. You can find out about the assessment accommodations available under the PARRC and Smarter Balanced Assessment Consortium Common Core State Standard assessment initiatives on their websites at http://www.parcconline.org/parcc-accessibility-features-and-accommodations-manual and http://www.smarterbalanced.org/wordpress/wp-content/uploads/2012/05/TaskItemSpecifications/Guidelines/AccessibilityandAccommodations/GeneralAccessibilityGuidelines.pdf
Ø The Affordable Care Act is allowing more families to access either a Qualified Health Plan, or Medicaid in states that had expansion. There are other benefits such as not excluding a child from coverage or dropping a child with a preexisting condition, no annual or lifetime caps on benefits, and continuing dependent coverage up to age 26.
Ø Some states have developed a Department of Children and Families which oversees most of these family support programs. Some programs, such as those for individuals with developmental disabilities, mostly focused on the adult population. Now, in these states, almost all of the programs for children are “under one roof.”
What can family caregivers do to get the services their children need?
Family caregivers must advocate for the services needed by their children with disabilities. For information on the Common Core Standards, see http://www.corestandards.org/. Other information on special education can be found at the U.S. Department of Education, Office of Special Education and Rehabilitative Services parent and family section of the website at http://www.ed.gov/parent-and-family-engagement. If family caregivers need help with special education issues, they can contact their Parent Training and Information Center at http://www.parentcenternetwork.org/parentcenterlisting.html.
For information on the Affordable Care Act, see https://www.healthcare.gov/. If family caregivers need advocacy regarding health issues, they can contact their Family Voices State Affiliate Organization or their Family-to-Family Health Information Center (in many states these are housed together) at http://www.familyvoices.org/states.
An overview of family support services can be found at the Child Welfare Information Gateway at https://www.childwelfare.gov/supporting/support_services/index.cfm. If family caregivers need help navigating family support services in their state, they can contact Parent-to-Parent at http://www.p2pusa.org/p2pusa/SitePages/p2p-support.aspx of their Governor’s Council on Developmental Disabilities found at http://www.nacdd.org/about-nacdd/councils-on-developmental-disabilities.aspx. If families are looking for support around their children with mental health needs, they can find their closest chapter of the National Federation of Families for Children’s Mental Health at www.ffcmh.org
Budget cuts are affecting children with special needs in various areas. By finding out their rights, and what programs offer, family caregivers can have the best results for their children with special needs.
Council for Exceptional Children http://www.cec.sped.org/
Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (www.spanadvocacy.org), a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269. She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork