In short
Act 97-2018 recognizes Down syndrome as a health condition and distributes concrete obligations among five agencies and insurers. Every health insurance organization or insurer contracted or in agreement to provide medical services in Puerto Rico is required to offer, as an additional optional coverage, the treatment of persons with Down syndrome from birth, and that coverage must include genetic testing, neurology, immunology, gastroenterology and nutrition, medical visits and medically referred tests, and remedial therapeutic services — physical, speech and occupational therapies and any other recommended by an authorized health professional — in the amounts and frequency that professional prescribes. The law also prohibits denying other covered services because of the effects of including this coverage, refusing to renew or cancelling it because the person uses the benefits, and cancelling an existing policy because a beneficiary was diagnosed when the condition was unknown at the time it was obtained. And Article 13 gives it teeth: violations constitute a cause of action in damages, the court shall award costs and attorney’s fees in favor of the prevailing party without needing to prove temerity, and an insurer violating Article 11 may be penalized up to fifty thousand dollars ($50,000).
What is it?
This is a bill of rights that, unlike almost all of them, can be taken to court. Its core is twofold: on one side it tells each agency what falls to it — Health, Education, Vocational Rehabilitation, Labor and Sports and Recreation each have their own article — and on the other it imposes on insurers a coverage they must offer and a list of things they cannot do. What makes it usable is Article 13: it turns non-compliance into a cause of action with attorney’s fees charged to the losing side.
Who can do it?
Persons who have Down syndrome, which the law defines as the genetic alteration caused by the triplication of the genetic material corresponding to chromosome 21. The law sets no ages for the bill of rights generally: Article 4 speaks of persons who have Down syndrome, full stop. There are ages within specific services, and they are worth knowing because they determine which agency to go to: the Department of Health is responsible for early intervention between ages zero (0) and three (3), and the Department of Education from three (3) to twenty-one (21). The permanent outpatient clinic the law orders the Department of Health to establish serves persons from age zero (0) onward. And there is one protection with an age cap: if a situation of abuse, institutional abuse, neglect, institutional neglect or human trafficking arises, the person is covered by the protections, rights, procedures and remedies established by the Department of the Family and the Department of Education up to and including age twenty-one (21), without prejudice to other protections, procedures, remedies and causes of action they may have.
Requirements
- Having Down syndrome, which the law defines as the genetic alteration caused by the triplication of the genetic material corresponding to chromosome 21.Verified against the official source
- For the optional coverage in private plans: that the insurer be contracted or in agreement to provide medical services in Puerto Rico. The law covers companies, individuals and local or foreign entities.Verified against the official source
- For remedial therapies: the recommendation of a health professional authorized to practice in Puerto Rico or the United States, in the amounts and frequency that professional prescribes.Verified against the official source
Documents you need
Cost
Step by step
Step 1: The seven rights of Article 4
The law opens by saying persons with Down syndrome shall enjoy all rights enshrined in the Puerto Rico Constitution and in applicable laws and regulations, and specifically shall have the right to seven things. The enjoyment of a full and dignified life, in conditions that ease their integration into society. A free, appropriate public education, in the least restrictive environment possible, specially designed to their individual needs and with all related services indispensable to their development. Health care appropriate to their condition, promoting their physical, intellectual and emotional health. Effective access to education, training, rehabilitation services and preparation for employment. The State’s protection against any manifestation of abuse or neglect. Receiving the supports needed in the process of seeking and identifying employment, once of legal age. And that government entities offer the possibility of employment, according to the person’s interests and capacities and with the necessary supports.
Step 2: The coverage the insurer must offer you
Read slowly here, because the exact word decides what you can demand. Article 11 says every health insurance organization or insurer, contracted or in agreement to provide medical services in Puerto Rico — whether companies, individuals or local or foreign entities — shall be required to offer as an additional optional coverage the treatment of persons with Down syndrome from birth. The insurer’s obligation is to offer it; the coverage, on your side, is optional. What that coverage must include is enumerated: tests, including but not limited to genetic ones, neurology, immunology, gastroenterology and nutrition; medical visits and medically referred tests; and remedial therapeutic services for independent living or assisted housing for adults over 21. The remedial therapeutic services must include, but are not limited to, physical therapies, speech therapies, occupational therapies and any other necessary therapy recommended by a health professional authorized to practice in Puerto Rico or the United States, in the amounts and frequency prescribed by the professional or specialist. That last phrase is what matters when a plan wants to cut sessions: the amount and frequency are set by whoever prescribes.
Step 3: The three things the insurer cannot do
The same article closes with three prohibitions, worth knowing because they cover the three typical ways of punishing someone for using a benefit. First: no insurer, benefits provider, benefits administrator, person or institution may deny or refuse to provide other covered services because of the effects including the Down syndrome coverage may have. Second: nor may they refuse to renew, remit, restrict or cancel the additional optional Down syndrome coverage because the person or their dependents are likewise diagnosed or use the benefits this law provides. Third: cancelling an existing health policy is prohibited on the grounds that one of the beneficiaries was diagnosed with Down syndrome and the condition was unknown at the time the policy was obtained.
Step 4: The government plan: what falls to ASES
Article 10 begins by recognizing Down syndrome as a health condition, and explains why: it is a genetic condition presenting medical conditions in the metabolic, immunological and gastrointestinal areas, and those who have it require speech and language, psychological, occupational and physical therapies, plus the medications and tests necessary for diagnosis and treatment. From there it gives the Health Insurance Administration two charges. One: to establish, as part of the minimum coverage and benefits under Article VI of Act 72-1993, those health treatments scientifically validated as effective and recommended for this population according to their specific needs. Two: to ensure the contracted insurance companies include within the coverage services such as genetics, neurology, immunology, gastroenterology and nutrition, which will include medical visits and medically referred tests, and remedial therapeutic services for independent living or assisted housing for adults over 21.
Step 5: Early intervention: Health 0-3, Education 3-21
The law splits early intervention between two agencies by age bracket, and knowing it avoids the wrong counter. The Department of Health shall be responsible for providing early intervention services for the Down syndrome population between the ages of zero (0) and three (3), including, without limitation, therapy services necessary for development and learning, speech and language, occupational, psychological, physical, visual and auditory therapies. The Department of Education shall be responsible, in coordination with the Department of Health’s Services Coordinator, for providing early intervention services between the ages of three (3) and twenty-one (21), with the same list of therapies. In addition, the law orders the Department of Health to establish a permanent outpatient clinic to provide all services necessary and indispensable for the full attention and treatment of persons from age zero (0) onward: besides those therapies, genetic testing, neurology, immunology, gastroenterology and nutrition, medically referred tests, and remedial therapeutic services for independent living or assisted housing for adults over 21.
Step 6: What falls to the school
Article 6 gives the Department of Education six concrete charges that can be cited in a school meeting. That the family, the community, care and development programs and the public school be able to identify and develop learning experiences and opportunities. That educational programs contemplate in their curriculum these persons’ special needs, including less restrictive school placement alternatives when necessary, an aide’s services, an individualized education that includes from childhood the development of adaptive skills for independent living when necessary, or accommodations enabling their education in smaller groups. That programs be developed ensuring wellbeing, safety and health through appropriate environments: safe areas, good interpersonal treatment, nursing services and adaptive-skills programs for independent living. That specific early attention programs be developed during the first six (6) years of life. Training Special Education teachers, occupational therapists and speech-language pathologists in designing functional objectives and goals for this population. And guaranteeing exposure to real employment experiences inside and outside the school setting and to other activities promoting an adequate transition to adulthood, including home maintenance activities, self-care and care of others, and activities in various community contexts.
Step 7: Employment, vocational rehabilitation and recreation
Three more agencies have their own article. The Vocational Rehabilitation Administration must offer services so the person can prepare for, obtain, retain or keep a job; guide the person and their relatives using an interdisciplinary team in which the Vocational Rehabilitation Counselor stands out; explore the availability of comparable services and benefits in other community programs and agencies; coordinate services with Community Rehabilitation Programs; and develop community projects aimed at training and employing young people and adults with Down syndrome. The Department of Labor and Human Resources shall offer training so they can integrate into society, obtain suitable employment and stay employed, plus seminars to educate the employees and contractors of entities or companies that employ these persons about the condition and their inclusion at work; it shall also promote, in coordination with the pertinent agencies and the Legislative Branch, initiatives aimed at developing and implementing incentives for companies that provide such employment. And the Department of Sports and Recreation shall offer opportunities to take part in its sports and recreation programs with the necessary assistance and accommodations, such as summer camps, social skills workshops, sports clinics, special competitions and adapted physical education.
Step 8: When the law is breached: Article 13
This is what separates this bill of rights from those that merely declare. Violations of the obligations stipulated in this law by agencies and government officials, as well as by any private person or entity, shall constitute a cause of action in damages and shall be subject to every civil or criminal cause of action they entail, under the legal order in force. And the law adds a fees rule that changes the calculus of whether suing is worth it: the court shall award payment of costs and attorney’s fees in favor of the plaintiff who prevails in their civil action claim under this Article, without needing to prove the other party’s temerity or frivolity. Separately, for insurers: every health insurance organization or insurer contracted or in agreement to provide medical services in Puerto Rico that violates Article 11 shall be sanctioned with a penalty never exceeding fifty thousand dollars ($50,000), at the court’s discretion.
Where to do it
It depends on what you need, because the law distributes the obligations by agency. The Department of Health handles medical, psychological and social attention, early intervention from zero to three, the permanent outpatient clinic for persons from age zero onward, and the registry of persons with Down syndrome the law orders it to create, keep updated and manage for official statistics, with an annual report to the Puerto Rico Institute of Statistics. The Department of Education handles school and early intervention from three to twenty-one. The Vocational Rehabilitation Administration, preparing for and sustaining employment. The Department of Labor, training and employer seminars. The Department of Sports and Recreation, sports and recreation programs with accommodations. The Health Insurance Administration answers for the government plan’s coverage. And if the problem is with a private insurer, Article 13 opens the judicial route. What we do not publish: phone numbers, forms or addresses for each of those steps, because Act 97-2018 does not name them.
How long it takes
What to do if something goes wrong
The distinction that causes the most confusion is in Article 11, and it must be stated exactly: the insurer’s obligation is to offer the additional coverage; the coverage itself is optional. That is, the law existing does not mean your policy already carries it. Ask whether it was offered to you and whether it is included, and keep the answer. What is enforceable without conditions are the three prohibitions: not denying other covered services because of the effects of including it, not refusing to renew or cancelling it because you use it, and not cancelling an existing policy because a beneficiary was diagnosed when the condition was unknown when it was obtained. And for therapies, the phrase that works when they want to cut sessions is that they go in the amounts and frequency prescribed by the professional or specialist. What we do not publish. We publish no costs: the law prices nothing, neither the optional plan nor the therapies, and it describes the outpatient clinic’s funds by origin — revenue from services rendered and billing to the government plan under Act 72-1993 and to insurers — without setting prices. We publish no deadlines: the law sets no term for anything, so cost and time stay unverified. We do not publish where the permanent outpatient clinic is or how to book an appointment, because the law orders it created but gives no address or procedure, and we will not assume them. We do not describe Act 72-1993 or the Article VI that Article 10 refers to, because we did not read it. A note on the text: in this compilation the articles jump from Article 11 to Article 13; we say nothing about an Article 12 that does not appear. And Article 14 orders every agency, government instrumentality or municipality serving this population to adopt regulation consistent with this law; those regulations belong to each entity and we did not read them.
Common mistakes
- Believing the Down syndrome coverage comes automatically in the policy: the insurer’s obligation is to offer it, and buying it is optional.
- Accepting a cut in therapy sessions: they go in the amounts and frequency prescribed by the professional or specialist.
- Accepting denial of other covered services because of the effects of including this coverage, which the law prohibits.
- Accepting cancellation of an existing policy over a diagnosis unknown when it was obtained.
- Going to the Department of Education for a baby’s early intervention: ages zero to three fall to Health.
- Ruling out the judicial route over lawyer costs: the court shall award costs and fees to the prevailing party, with no need to prove temerity.
- Looking only for health services: the law also imposes obligations on Vocational Rehabilitation, the Department of Labor and Sports and Recreation.
Frequently asked questions
Does the health plan have to cover the therapies?
Article 11 requires every insurer contracted or in agreement to provide medical services in Puerto Rico to offer, as an additional optional coverage, the treatment of persons with Down syndrome from birth, and that coverage must include physical, speech and occupational therapies and any other necessary one recommended by an authorized health professional, in the amounts and frequency that professional prescribes. The insurer’s obligation is to offer it; the coverage is optional, so you must check whether it is included in your policy.
Can they cancel my policy over the diagnosis?
No. The law prohibits cancelling an existing health policy on the grounds that one of the beneficiaries was diagnosed with Down syndrome and the condition was unknown at the time the policy was obtained. Nor may they refuse to renew, remit, restrict or cancel the additional optional coverage because the person or their dependents are diagnosed or use this law’s benefits.
Who provides early intervention?
The Department of Health from zero (0) to three (3), and the Department of Education from three (3) to twenty-one (21), in coordination with the Department of Health’s Services Coordinator. Both brackets include therapies for development and learning, speech and language, occupational, psychological, physical, visual and auditory.
Can I sue if they do not comply?
Article 13 says violations of this law’s obligations by agencies and government officials, as well as by any private person or entity, constitute a cause of action in damages. And it adds that the court shall award costs and attorney’s fees in favor of the prevailing plaintiff, without needing to prove the other party’s temerity or frivolity. An insurer violating Article 11 may be sanctioned up to fifty thousand dollars ($50,000), at the court’s discretion.
Is there help finding a job?
Yes, at two agencies. The Vocational Rehabilitation Administration must offer services to prepare for, obtain, retain or keep a job, guide the person and their family with an interdisciplinary team, coordinate with Community Rehabilitation Programs and develop training and employment projects. The Department of Labor offers training and employer seminars, and promotes incentives for companies that provide such employment. In addition, Article 4 recognizes the right to receive the supports needed to seek and identify employment upon reaching legal age, and that government entities offer the possibility of employment according to the person’s interests and capacities.
Official sources
These are the government pages this guide is based on.
- Departamento de Salud de Puerto Rico
Salud
bvirtualogp.pr.gov
- Puerto Rico Department of Health
Salud
www.salud.pr.gov
Last verified
August 23, 2026
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