Parents, caregivers and advocates of children and adults with special needs are inundated with acronyms as they navigate their state’s disability systems.
Among the acronyms they likely encounter: EPSDT-Early Periodic Screening, Diagnosis and Treatment; FIT-Family Infant & Toddler programs; IEP-Individualized Educational Program; FAPE-Free Appropriate Public Education; SSI-Supplemental Security Income; CDB-Childhood Disability Benefits; and HCBS-Home and Community Based Services.
There are two other acronyms, however, that should become familiar in the never-ending effort to advocate for children with special needs-FOIA and APA. Armed with an understanding of FOIA and the APA, families and other advocates can access vast amounts of information that impacts the quality of life of people with special needs. Understanding FOIA and the APA will empower families and advocates to play a constructive and productive role in shaping the laws, regulations, and public policy impacting their state’s special needs community.
What are these “acronyms of better advocacy”? FOIA stands for Freedom of Information Act. APA stands for Administrative Procedures Act. Although these laws may go by another name in some states, all 50 states have adopted some version of both FOIA and the APA.
The website of the National Freedom of Information Coalition provides information about every state’s FOIA law (https://www.nfoic.org/coalitions/state-foi-resources/state-freedom-of-information-laws ). Florida State University Law School lists every state’s APA citation (https://law.fsu.edu/library/admin/admin3.html). An internet search will almost certainly provide mountains of helpful information in plain English about how to put each state’s FOIA and APA laws to work. It is always a good idea to review the actual language of a state’s laws and not to rely solely on other sources.
At this point you may be thinking “Why should I really care about FOIA or my state’s APA?” Well, you should if this scenario sounds even a little familiar to you…
Parent of special needs child-Question to a state human services agency employee: “Why does the agency in our state only provide Services X and Y? I recently read an article that our neighboring state has Alternative Service Z for children with the same diagnosis as my child. Why can’t we do Alternative Service Z here in our state?
Agency staff-Answer: “Because our disability system provides Services X and Y, and that’s the way we have always done it in this state.”
SN parent-Question: “OK, I understand that, but it does not answer the question of why our state cannot offer Alternative Service Z too.”
Agency staff-Answer: “Like I said, it is the long-standing policy of this state that we provide Services X and Y for the type of disability your child has.”
SN parent-Questions: “Hmmm… Has anyone at the agency ever looked into whether or Alternative Service Z could be implemented in our state for the same or less cost that the current Services X and Y? Is the policy limiting services in our state to “only services X and Y” in writing? Is it an agency policy, or a formally adopted rule? Or is it in an actual law adopted by the state legislature and signed by the governor?”
Agency Staff-Answer: “The agency considered alternatives way back when we started providing Services X and Y… and it says right in the agency program manual that service options are X and Y.”
Although you may be thinking that it would feel pretty good to give this agency staffer a candid assessment of his or her customer service skills, it is best to stay calm and thank the person for his or her time.
Remember, FOIA Is Your Friend
“Show me the documents.”
When you hang up the phone, take a few moments to write down as many details of the conversation as you can recall. Next, take a careful look at your state’s FOIA law. Then write a “Freedom of Information Act Request” or “public records request” letter to the agency providing a detailed description of the public information you want the agency to produce. Not sure how to write the FOIA request? There are many samples out there-an internet search for “sample FOIA request” produced more than 110,000 hits. The scope of your FOIA request can be very broad, very narrow, or both. For example:
“I am requesting that any and all documents in the possession of the agency regarding Disability Services X and Y in this state be made available for inspection and copying. This request for public information includes all manuals, reports, studies, internal communications between any agency staff members, and external communications between any agency staff members and any other person, including, but not limited to, any state legislators and any service providers of Services X and Y.
In addition, I am also requesting any and all documents in the possession of the agency regarding this state’s consideration of and decision not to provide Alternative Disability Service Z. Alternative Service Z is currently available in the neighboring State of A. This FOIA request seeks all documents that the agency has identifying Alternative Service Z, including any documents identifying the legal, economic and/or public policy bases for the agency’s decision not to make Alternative Service Z available in this state.”
Generally speaking, all FOIA laws will impose time limits within which public agencies must provide a response to a citizen’s FOIA request. If a public agency refuses to comply fully with the FOIA request and the dispute ends up in court, the public agency may even have to pay for the attorneys’ fees of the person requesting the public records.
FOIA laws all have exemptions specifying the information that public agencies do not have to make available in response to a FOIA request, including confidential information about people receiving services. Do not let a public agency get away with telling you that you cannot have the information you asked for in your FOIA request because it contains confidential information.
First, your state’s FOIA law will probably include a requirement that any public agency that refuses to make documents must identify every document withheld and provide the reason the agency withheld the document from you. Second, if a public record contains both information responsive to your FOIA request and confidential information, the public agency is generally required to redact the confidential information and to provide the document to the person requesting it. “Redact” is just a fancy way of saying “take a big black marker, cross out the confidential stuff, and give me the document with rest of the information.”
An example of this could be if you wanted to know how many people in your county had been diagnosed with autism and were receiving Medicaid-funded home and community based services. You might want to know the range of services these people were receiving and the range of their waiver budgets. You could file a FOIA request with the public agency and ask for “copies of all current service agreements for all individuals with autism in Washington County receiving home and community based services.” The agency might give you an answer like “Sorry, that information is confidential.” Your response should be: “Redact the names, addresses and social security numbers of the people receiving the services, but the ages, service program details and the service budgets details are all public information that the agency is required to provide.”
You might be able to skip a step by stating upfront in your FOIA request letter that the agency should redact confidential information on any documents containing both confidential information and responsive public information.
Know Your State’s APA
When it comes to programs and services for people with disabilities in every state, the legal “chain of command” generally runs this way: (A) federal laws; (B) federal regulations; (C) state laws; (D) state regulations; and finally, (E) state agency policies, practices, guidance documents, procedures or program manuals. The federal laws and regulations that authorize states to develop Medicaid programs providing services to different populations of people with disabilities are very broadly written. In other words, states have a lot of flexibility in designing and implementing disability service programs within their Medicaid programs. As many parents already know, much of how a disability program actually works is based on state agency “policies” and “practices.”
Unlike laws and formally adopted regulations, many state agency policies and practices have not gone through a public review process known as “notice and comment.” Instead, many state policies and practices are developed, consciously or by inertia, internally, within the state agency. That is how we end up with a public agency’s “because-that-is-the-way-we-have-always-done-it” policy.
APA to the rescue
This is where your state’s administrative procedures act can help. The general purpose of a state’s administrative procedures act is that public agencies should maximize the involvement of the public in the development of rules that implement laws.
If a decision about what services your child is or is not receiving is based on a public agency’s unwritten policy or practice, your state’s APA may give you the right to force the agency to put the policy or practice in writing in a single document. Remember to give the agency a written FOIA request for all documents relating to the policy, including internal agency emails. The state’s APA may even require that certain policies or practices be adopted as regulations, complete with publication, “notice and comment,” and a vote by an official body.
Strength in numbers
Even if your state agency has put its policy in writing, or even if it has adopted a rule for the current service program using the full formal process, this does not mean that parents are stuck with that program.
Check your state’s APA for the steps required to petition a public agency to adopt, amend or repeal a rule. Your state law may allow a single individual to file a petition for rule-making, but some states may require a minimum number of people to sign the petition for rule-making. Even if the APA in your state allows an individual to file the rule-making petition, it is a good idea to gather the signatures of as many like-minded parents as you can. It is a truism to say that the agency is going to take a petition with 100 signatures more seriously than it will take a petition from a single person.
If your petition is to get your state agency to allow “Alternative Service Z” in your state, then it would be a good idea for your petition to include information about whether any other states already allow Alternative Service Z. If the other states already offering Alternative Service Z are doing so at the same or less cost than your state is implementing Services X and Y, your petition should highlight that fact. Be aware that an agency hostile to your proposal may produce facts and figures claiming that Alternative Service Z is much more expensive, so it is a good idea to present your own data at the start, if possible.
If, after all of that effort, your public agency denies your petition, remember that all of the agency’s internal communications and documentation generated or acquired during the agency’s consideration of the rule-making petition are public records. Send the agency a new FOIA request for all public records related to the agency’s consideration of your rule-making petition. After that, your next stop will likely have to be the legislature.
The Freedom of Information Act and Administrative Procedures Act exist in some form in every state to give all citizens access to public information and a voice in how public agencies implement the federal and state laws. FOIA and the APA are powerful tools for parents in their never-ending advocacy for their children with special needs. You may not win every battle, but you do not have to settle for the agency’s “because-that-is-the-way-we-have-always-done-it” answer. They are public agencies, spending public money. You have a right to know how and why public agencies do what they do. Do not let anybody tell you otherwise.