Treatment Diagnosis PWS Stages
 
The two most dominant characteristics of Prader-Willi Syndrome are insatiable appetite (hyperphagia) and aberrant behaviors. Unfortunately, there is no cure yet that will eliminate or manage all of the symptoms associated with the disorder.

There are, however, various treatments and therapies that can help reduce or even alleviate some of the symptoms. Various medications, vitamins, and other treatments have been tried; some of which have been helpful in particular cases.
Treatment, therefore, is symptomatic and consists of:
Early diagnosis and early intervention therapies
Therapeutic interventions including
  Growth Hormone therapy
  Occupational therapy
  Physical therapy
  Speech and Language therapy
  Social Skills therapy
  Sex Hormone therapy
Behavior management strategies
Weight management through diet, environmental controls, and exercise
Special education services
 
Early Diagnosis return to top
 
High-resolution chromosomal studies combined with molecular genetic testing is extremely accurate in detecting abnormalities of chromosome 15 for diagnosing PWS. Early diagnosis of PWS gives parents an opportunity to manage their child's diet and avoid obesity from the start, and may facilitate a family's access to critical early intervention services and therapies and help identify areas of need or risk.
 
Growth Hormone Therapy return to top
 
Probably the single-most important therapeutic intervention thus far for the treatment of Prader-Willi syndrome is Growth Hormone Therapy.

For reasons not yet completely understood, but probably having some connection with a malfunction in the hypothalamus portion of the brain, individuals with Prader-Willi syndrome experience a deficiency of growth hormone secretion. In June of 2000, the U.S. Food and Drug Administration (FDA) approved an application from Pharmacia Corporation (now Pfizer) to market their recombinant growth hormone product Genotropin, for the treatment of growth failure due to Prader-Willi syndrome. PWS is now one of the approved indications for growth hormone medication, and children with PWS can now be considered for growth hormone treatment based solely on their diagnosis and growth pattern. A sleep study to rule out respiratory problems is generally required before treatment can begin.

There is no longer any question that growth hormone treatment can improve the health and quality of life of children with PWS. Growth Hormone Therapy is now recognized as providing many potential and significant benefits to children with PWS including increased height and growth rate; increase of hand and foot sizes to normal proportions; decrease in body fat; decrease in body mass index; increase in muscle development; improved respiratory function; improved physical performance; increase in resting energy expenditure; improvement in cholesterol levels; increase in bone mineral density. The most common side effects of growth hormone are minor: occasional bruising or slight bleeding at the injection site; and rarely, other side effects include headaches; swelling in the feed and legs; increased levels of insulin; decreased levels of thyroid hormone; elongation of lower face; and progression of a pre-existing scoliosis. Although the FDA has approved growth hormone treatment for children, endocrinologists do currently prescribe growth hormone for infants and adults.

Most insurance companies will now cover growth hormone therapy for PWS (though it can require an appeal after an initial denial of the claim). Growth hormone is prescribed and monitored by an endocrinologist who is knowledgeable about PWS or is willing to consult with an endocrinologist who is expert in PWS.

After receiving a prescription for growth hormone, a nurse will teach the care provider how to administer the medication, which consists of a subcutaneous (under the skin) shot using a short, thin needle, similar to that used by individuals who have diabetes. Growth hormone is administered every day, generally in the evening. Most endocrinologists recommend giving the shot at night time because growth hormone is naturally released in the body while we sleep. Administering synthetic growth hormone medication during the evening, then, simulates what the body would have naturally done on its own. Some families incorporate the shot into the nightly bedtime routine, while others wait until their child has fallen asleep before giving the shot. It is most advisable to treat the growth hormone shots matter-of-factly; the more calm and matter-of-fact about it parents are, the calmer the child is likely to be.

A visit to the endocrinologist should occur every three to four months for follow up visits so that the physician can adjust the dosage according to the child's growth pattern (some physicians also monitor IGF-1 levels). After the child has reached his genetically determined linear height, low, maintenance dose growth hormone therapy will continue in order to provide the ancillary benefits of this medication.
 
Occupational Therapy return to top
 
Occupational therapy should begin in infancy to develop muscles and improve fine and gross motor skills. As the child grows older, gross motor skill development will be addressed by a physical therapist, while occupational therapy will continue to help improve hand strength, finger strength and dexterity, motor planning, coordination, and sensory integration issues.

Occupational Therapy for the infant will focus upon improving your baby's overall strength and endurance. Some occupational therapists specialize in feeding issues and are available to help the baby work on sucking, swallowing, and later chewing skills. The therapist will place the baby in various weight bearing positions, such as on his or her tummy to help strengthen the neck, back, and shoulder muscle groups. Therapy will utilize fun toys, textures, songs, movements, and more, with the emphasis always being on "fun!" As the infant grows older, Occupational Therapy will focus upon helping the child improve his or her fine motor skills, such as cutting, coloring, pincer-grasp, writing, hand-eye coordination, etc. Playing with fun toys and games such as Easy-Grip Pegs and Pegboards, finger paint brushes, lacing beads and shapes, Playdough, Theraputty, coloring crayons, wooden puzzle pieces with grips, Light Brite (for the older child), picking up cotton balls or pom-poms with tongs or tweezer-tye pinchers, etc. will help improve the child's fine motor skills.

The body's sensory integration system involves the brain's processing and organizing all of the sensory input it receives from the body. The brain processes the input received from our sense of sight; sound; touch; taste; the vestibular system which involves body awareness, movement, a sense of balance, and the pull of gravity upon the body; and the proprioceptive system which informs our brain about our body in motion from the input received from our joints and muscles.

Many children with Prader-Willi syndrome don't efficiently process the information their body's senses receive, and as a result are too sensitive (hypersensitive) or less sensitive (hyposensitive) than they ought to be to operate effectively and safely in their environment. For example, some children may be hypersensite to certain textures on parts of their skin which may lead to not wanting to wear gloves, tags in shirts, have difficulty with their hair being washed or cut, have aversions to certain texture foods, etc. If a child's proprioceptive system doesn't work properly, the child will have difficulty negotiating or moving his body in space, i.e., difficultly ducking one's head under a table to retrieve an object, be more "accident prone," etc. Difficulties with the vestibular system will cause the child to be either hypersensitive or hyposensitive to the body's action upon or involvement with the environment, i.e., have difficulty crawling, walking, climbing, maneuvering objects with one's fingers or hands; have difficulty standing or walking on unstable or uneven surfaces, avoid to an extreme or seek out to an extreme certain activities such as swings, twirling around, or "wrestling-type" activities.

Sensory Integration Therapy should begin as early in life as possible to help the child better integrate his senses so that he may operate more safely and efficiently in his environment. Many Occupational and Physical Therapists are knowledgeable about Sensory Integration Therapy and incorporate integrative techniques into their therapy. It will be important for parents and care providers to make certain that therapists have an understanding of and experience with sensory integration therapy.

Once identified and assessed by California's Regional Center system of care delivery, parents and care providers should receive a referral to a qualified Occupational Therapist who may even come to the parent's home to provide services while the child is between the ages of birth to three years. Parents and caregivers should participate in the therapy sessions in order to continue the therapeutic interventions between therapy sessions.
 
Physical Therapy return to top
 
Physical therapy should begin as early as possible, alongside occupational therapy, according to how much therapeutic activity the child and the family can tolerate. Physical therapy helps strengthen specific muscle groups important for improving posture and gross motor skills. Children with PWS often have difficulty with motor planning, or organizing their bodies to perform fine and gross motor activities, so therapy should be designed to help the child learn how to move his or her body to change positions.

As with occupational therapy, it is important for parents and caregivers to participate and/or observe the child's physical therapy in order to incorporate at home the interventions the therapist uses with the child. There are many therapeutic interventions parents can do outside of therapy that won't feel "therapeutic" such as "tummy time," placing the child on his or her tummy with his or her toys to help strengthen the arms, neck and shoulder muscles; reaching up high for toys; rolling; swinging; and later tricycle riding.

Growth hormone therapy will help improve the child's muscle strength and abilities. Even with growth hormone therapy, however, lighter weight toys may be easier and more enjoyable for the young infant to play with.

Due to low muscle tone, some children with PWS may have excessive foot pronation. Corrective devices, such as dynamic ankle foot orthotics (DAFOs), or Sure Step orthotics, can assist in earlier, more stable walking.

Some children, even those treated with growth hormone, have more difficulty obtaining independent walking. Some parents have found front rolling walkers helpful to provide additional support. Remember though, all children with Prader-Willi syndrome do walk; some just later than others.

Throughout childhood, physical therapy will continue to be important to assist with strength, endurance, coordination, postural stability, and motor planning development.
 
Speech and Language Therapy return to top
 
Overview of Speech Therapy Services

Most children with Prader-Willi syndrome have an underlying speech disorder, such as developmental speech delay or childhood apraxia of speech. Therefore, oral motor/speech therapy should begin in the first year of life, well before the child is actually able to speak. Oral motor "exercises" disguised as fun games enhance control of the muscles of the mouth and tongue, teach fundamental motor planning skills, and will help with articulation and pronunciation later on.

Some speech therapists specialize in feeding issues and are available to help your baby work on sucking, swallowing, and later chewing skills.

Speech and language therapy should continue throughout early childhood in order to facilitate and improve verbal language development. Many therapists recommend using picture communications systems and/or sign language to augment and enhance verbal language development. These techniques can help your child communicate before he or she has the ability to form words or sentences. Using sign language does not delay speech; in fact its use helps motivate verbal communication. Kids generally drop signs as verbal skills increase.

Songs, rhymes and finger plays are great activities to help your child develop his or her ability to coordinate oral movements, sequence sounds and learn new vocabulary words. The rhythm and repetitive nature of the songs makes it fun and easy. There is a wonderful compilation of songs on a CD titled, Time to Sing! produced by a speech-language pathologist especially for kids who have speech problems. The CD, which features traditional songs that are played more slowly making it easier for kids sing along, may be purchased through www.apraxia-kids.org.

As your child grows older, you and the speech therapist should be watchful of the characteristics associated with childhood apraxia of speech, often called speech dyspraxia. Children with PWS often have difficulties with motor planning in general, and speech dyspraxia is a problem of motor planning in the speech areas of the brain. A diagnosis of speech dyspraxia requires speech and language therapy interventions specific to this speech disorder.

Some children experience intermittent dysfluencies of speech, or stuttering. Word finding or word retrieval problems may be associated with dyspraxia and may exacerbate stuttering for a period of time. Speech and language therapy interventions specific to the treatment of dysfluency will help improve "smooth talking."

Individuals with Prader-Willi syndrome often have thick, sticky saliva, don't produce sufficient amounts of saliva, and subsequently experience the symptoms of dry mouth. A dry mouth can interfere with the smooth movement of the tongue, cheeks and lips, interfere with swallowing, and interfere with production of sounds and clear speech. Products designed to relieve or reduce the symptoms of dry mouth are extremely helpful. Most people find Bioténe oral hygiene products helpful, such as Bioténe toothpaste (for young children, a pea size amount twice daily should be fine). A few parents have needed the assistance of a prescription medication to reduce dry mouth symptoms.

Speech therapists often use food items to motivate and reward. While it may be therapeutically appropriate to use food items on occasion, such as placing a dab of peanut butter around the outside corners of the mouth to aid with tongue movement and coordination, etc., it is generally advisable not to use any food items. Most children with PWS are extraordinarily motivated by genuine, enthusiastic praise and by providing them with other tangible items such as stickers, etc.

Appropriate speech and language therapy services will help your child communicate him or herself fully and clearly, and will facilitate his or her social relationships.
 
Referral Box
  
 

Website: www.apraxia-kids.org

Brochure: Speech and Language and PWS. Published by Prader-Wili Syndrome Association

CD: Time to Sing! produced by a speech-language pathologist especially for kids who have speech problems. The CD may be purchased through the www.apraxia-kids.org website.

Bioténe Oral Hygiene Products. Produced by Laclede, Inc. Can be purchased in the toothpaste aisle of most grocery stores or pharmacies.

  
 
Social Skills Therapy return to top
 
The foundations of social relationships begin in infancy. When Baby coos to Parent, Parent listens. Then it is Parent's turn to respond to Baby, who listens. This simple exchange teaches the infant one of the basic "rules" of social relating, and indeed that there even are "rules" of social engagement.

For many reasons, including speech problems, processing delays, physical limitations, cognitive impairment, emotional maturity, and/or sensory integration issues, children with Prader-Willi Syndrome often need extra help learning and practicing good social skills. Exposure to other children in various social settings, including preschool, is important, especially when there are no other siblings in the family. Social skills therapy can be very helpful to a child with Prader-Willi Syndrome and can begin any time from age three years (and sometimes as early as two years). The goal of social skills therapy is to help the child develop and strengthen his or her social and play skills so that he or she can initiate, develop, and maintain genuine, fulfilling, and long-lasting friendships.

Social play skills typically progress along a continuum moving from isolated play, to parallel play, to interactive play, and finally to cooperative play. Some children with PWS may have difficulty moving from parallel play to interactive or cooperative play. Social skills therapy interventions involve working through a sequence of developmental social skills which include attunement, joint attention, reciprocal interactions, topic maintenance, and topic maintenance on a non-preferred topic. Some social skills programs provide therapy in a group setting in a therapist's office. Some social skills therapists prefer that play dates be scheduled with a typically-developing peer in a natural environment, such as at home or at the park, where the child can be observed by the therapist who can then make appropriate interventions.

Some speech therapists provide Social Skills groups wherein children of matched chronological and/or social ages form a play group and practice various social skills on a regular basis. Regional Centers will often fund social skills therapy. Some school districts contract with social skills therapists and bring these services to the school setting. Helping the child receive social skills therapy is important; it is arguable that social skills is the most important therapy, as it paves the way toward meaningful social connections and genuine friendships.
 
Sex Hormone Therapy return to top
 
Prader-Willi Syndrome results in a problem within hypothalamus and the pituitary gland, the gland that controls or manages the hormones in the body. This dysfunction causes a disorder called hypogonadotropic hypogonadism which leads to a decrease in the function of the ovaries in girls and testes in boys. Sex hormone levels are too low; boys do not produce enough testosterone and girls do not produce enough estrogen. Hypogonadism generally causes boys to have a small penis, undescended testes, and an underdeveloped scrotum, and girls to have small labia minora and clitoris. For some reason, a few children (estimated to be about 15%) experience premature adrenarche and produce public hair, acne, and/or adult order.

Hypogonadism generally keeps individuals with Prader-Willi Syndrome from progressing through an adolescent growth spurt sufficient enough to develop secondary sex characteristics. Puberty is generally delayed and incomplete, and sexual development is deficient. Adolescent boys may develop only a sparse beard some time in their twenties, body, pubic and auxiliary hair, and the sex drive and function may always be below normal. Adolescent girls may develop small breasts, and most (55%) will not have menstrual cycles (amenorrhea) or may have few or irregular cycles (oligomenorrhea). Menstruation, when it does occur, may begin as late as age thirty. The uterus and vagina usually remain small making exams difficult. While most men and women with Prader-Willi Syndrome are believed to be infertile, two women with PWS have had babies.

Sex Hormone Replacement Therapy can be helpful to normalize your adolescent's pubertal growth. The use of replacement sex hormones has not been systematically studied, although it has been shown to be effective in improving secondary sex characteristics. Both males and females with PWS generally show good response to hormone deficiency treatment; young men generally improve their body shape, facial and body hair, genital size and function, while young women experience greater breast development and develop menstrual cycles. For men, treatment consists of a daily low dose testosterone patch or gel, which for some may be preferable to a monthly injection of testosterone which has been reported to increase behavior difficulties and aggression in some men. Treatment for women consists of cycling estrogen and progesterone. As with all medications containing estrogen, the risk of blood clots is increased, especially with obesity. Careful monitoring of these and all medications is essential.

Scientific and medical advances are being made every day, and the treatment options may very well be greater by the time your child reaches puberty.
 
Behavioral Interventions and Management Strategies return to top
 
The second most troubling aspect for many families beside the symptom of hyperphagia is behavioral problems. Individuals with Prader-Willi Syndrome tend to have an unstable, unpredictable emotional system and experience "emotional dysregulation." This dysregulation can lead to a lower tolerance to real or perceived frustrating events and an increase in feelings of anxiety. Individuals with PWS need extra help in managing their emotional system. Laying a positive foundation is the first step in this process.

Parenting techniques that incorporate and emphasize positive reinforcers, consistency and structure are beneficial for all children and especially helpful to children and adults with PWS because these create an overall sense of predictability and safety. It is important to establish consistent routines and schedules, including consistent bedtime, naptimes, and wake up times; consistent snack and meal times; consistent therapy and play times; etc. Predictability helps the individual answer the equation 'if this happens first, then that could happen next.' Predictability keeps us feeling safe; if we do not develop this sense of predictability, then we do not develop a sense of overall safety and are more prone to emotional instability. The ability to predict the future is a developmental skill, and children with developmental disabilities of any sort tend to have difficulty foretelling the possible consequences of their (or any) actions. The parents' and caregivers' goal is to help individuals with PWS develop this important skill by building consistent results from actions and people, by building regular routines and schedules, by providing a stable living environment, and by providing the individual with clear expectations for behavior.

Consistency in terms of parental behavior is equally important. The old adage, "Say what you mean and mean what you say" provides a helpful guideline. For example, if you tell the child, "You will need to stop in five minutes and clean up your toys" then you must help the child stop and clean up in five minutes. Give positive attention for successful behaviors, and ignore or gently limit negative and detrimental behaviors. Brief (the general rule of thumb is one minute per annual age) "time out" periods in a safe area for difficult tantrums can be helpful for the child to regain his or her emotional stability, and be helpful to the parent. Providing calm and consistent structure early in life may help reduce tantrum behavior in the future. Parents are the child's model of emotional regulation. The parent's job is to always be cool, calm and collected even, and especially, in the face of the child's emotional volatility.

It is helpful to provide individuals with limited choices as early and as often as possible. For example, allowing a child to choose whether he or she wants to wear the blue shirt or the red shirt; clean up their toys in five minutes or six minutes; help set the table now or after they finish their current activity; etc. can give the child a sense of appropriate control and power over his or her world and helps build decision-making and problem-solving skills.

Children and adults with PWS typically have a low tolerance to real or perceived frustrations which can lead to quick tantrum or meltdown behaviors. It is helpful to teach the child the art of compromise and negotiation as this can help reduce feelings of frustration while activating and encouraging "thinking" skills while reducing the downhill slide into behavior that is emotionally-driven. Though its title is a bit daunting, the book, The Explosive Child can be a helpful guide to separating out those things which are non-negotiable and worthy of experiencing a meltdown over (such as safety matters), those things which you don't care at all about and therefore allow the child do to unquestioned, to those things which you can negotiate with the child.

It is generally recommended to ignore inappropriate behavior that occurs in the context of appropriate behavior, and it is generally recommended to ignore arguing. If the individual is calmly discussing an issue with you, it is fine to listen and consider his or her perspective. If the individual engages in loud, aggressive, or persistent arguing, tell him he or she may not yell or argue, and then ignore subsequent inappropriate behavior. A recommended basic strategy for addressing argumentative behavior in Prader-Willi syndrome is:

1. Make your decision about the issue and verbally state your conclusion.
2. If possible, have your child repeat back your decision and praise this response.
3. If you have an opportunity, briefly redirect your child to some other activity or situation.
4. Completely ignore any additional arguing or discussion on the topic.

Psychotropic medications can be helpful to some individuals who experience an underlying chemical imbalance which interferes with their ability to effectively manage their emotions and behavior. It is essential, however, to develop a solid and predictable structure for your child and utilize positive behavior management strategies.
 
Weight Management return to top
 
Infants and Children
Hypotonia and decreased arousal levels generally make it difficult for infants with Prader-Willi syndrome to maintain and sustain an adequate suck. While there have been some babies who have been able to breastfeed, it is more usual that special feeding techniques will be necessary to help the baby receive adequate nourishment so that he or she gains appropriate weight. If the baby has difficulty sucking and swallowing breast milk or formula from a regular bottle nipple, the parent or care provider may want to discuss with the pediatrician the use of special nipples, such as a Haberman nipple system. Some occupational therapists also specialize in feeding issues and can be a helpful resource. If the child's hypotonia interferes with the baby's ability to take in an appropriate amount of calories, the physician may recommend using a nasogastric tube, or NG-Tube, for a short period of time. NG-tube feedings can be used alone or in conjunction with bottle feedings. If feeding remains difficult for a prolonged period of time, a gastric feeding tube or G-Tube, inserted directly into the stomach, may be recommended. Whichever method works best for the baby, it is important that he or she receive the proper amount of calories to sustain healthy growth and brain development. Whatever feeding technique used, bear in mind that some mothers have found it especially bonding to allow their baby to nuzzle the breast after feeding. And remember, as your infant grows older and stronger, feeding issues will resolve.

While the Federal Drug Administration (FDA) has not yet approved the use of human growth hormone in infants, it has been reported that infants treated with growth hormone generally improve their suck at a faster rate and experience greater success bottle feeding, and sometimes even breast feeding, than infants who are not treated with growth hormone.

Some parents supplement their baby's, and later child's, diet with enzymes and vitamins such as Coenzyme Q-10 and/or Essential Fatty Acids (EFA's) including DHA. The pediatrician and/or nutritionist may have information about these supplements, and it may be helpful to network with other parents of children with Prader-Willi Syndrome who are more knowledgeable about these supplements.

It is generally recommended that parents may rely upon the good advice of the child's pediatrician in regard to amount and types of foods to feed the baby and toddler, bearing in mind the importance of providing healthy fats, such as whole milk or soy milk until age two years for good brain development, while not overfeeding. Generally, infancy is characterized by "failing to thrive" and is not the period during which parents need to be concerned with hyperphagia symptoms.

Childhood Through Adulthood
For many to most children, an increased awareness or interest in food becomes apparent some time between two to five years of age. This interest can be transient or constant. For some children the symptom of hyperphagia starts subtly, while for others it can begin intensely. The degree of hyperphagia varies among children with PWS; some children may not ask for food unless it is snack or meal time or unless it is being eaten in front of them, while others express a desire for something to eat on a more continuous basis, even shortly after finishing a snack or meal. The degree of hyperphagia may also change from day to day; one day the child may express feeling hungry frequently, while the next day there may be an absence of excess hunger. Remember, hunger patterns of children without PWS can also vary from day to day, depending upon the child's activity level, growth spurts, etc.

Families often find it helpful to establish a routine or schedule for meals and snacks early on. Many families find it helpful to schedule meals and snacks at 2-3 hour intervals. It is important to work with the pediatrician and/or a nutritionist who is knowledgeable about PWS to ensure that the child's total daily caloric intake does not exceed what his or her body can expend, which in general is a little more than half of that of an individual without PWS. (Growth hormone treatment may allow some individuals, though not all, to tolerate a few more calories per day.) Eating healthy foods is important not only for the child with Prader-Willi Syndrome, but for every member of the family! Remember, it is far easier to maintain a healthy weight than it is to lose excess weight that has been gained.

Many individuals with Prader-Willi Syndrome simply cannot fight the compulsion to eat therefore it is often advisable to lock away all food in pantries, in the refrigerator, and in the freezer. Adults with PWS have reported that knowing food was locked away and not available to them helped reduce their overall anxiety. It is important to bear in mind that children and adults with PWS can be very clever about obtaining food regardless of their level of intelligence.

Exercise should be begun as early as possible and be very regular. The best exercise is fun exercise!
 
Special Education return to top
 
The Individuals with Disabilities Education Act (IDEA), passed in 1975, guarantees certain rights to all children with disabilities age three years to twenty-two years of age. These rights include the right to a Free Appropriate Public Education (FAPE); the right to be educated in the Least Restrictive Environment (LRE); the right to receive Supplementary Aids and Services such as physical therapy, occupational therapy, speech therapy, counseling, and classroom aids; and the right to receive a Fair Assessment of the child's needs.

To protect these basic rights, the law requires that there must be an Individualized Educational Plan (IEP). The IEP meeting(s) are the discussion where parents and school personnel jointly make decisions about an educational program for a child with a disability. The IEP document is the written record of the decisions made at an IEP meeting for the child's educational program. The IEP is the "instruction sheet" for the child's educational plan for the duration of that IEP, which must be written each year, but may be altered with the agreement of the parents and school personnel. Due Process rights protect the child's IEP from being changed without notifying the child's parents, and provide the parents with a mechanism to dispute and resolve any issues that arise regarding the child's education.

The family's first contact with the school system will probably be shortly before the child turns three years old when the Regional Center will schedule a "Transition Meeting" with the parent, the Regional Center caseworker, and a representative of the child's school district. The school district may arrange for various therapists to assess the child's needs as they relate to the child's ability to productively participate in his school environment. These assessments will probably include physical, occupational, speech, social/emotional development. The child's therapeutic services, as they relate to helping the child meet his or her educational needs, should be provided by the school district.

Not all children with PWS need to receive special education services, but care providers should know that any child younger than three years, potentially eligible for special education, shall be afforded the protections provided pursuant to the California Early Intervention Services Act, and that early educational opportunities must be made available to all children between the ages of three to five years who require special education services. Special education is a crucial component of the total public education system and is designed to provide education in a way that promotes maximum interaction between children with disabilities and children who are not disabled, in a manner that is appropriate to the needs of both. Special education programs are supposed to provide a full continuum of program options to meet the educational and service needs of individuals with exceptional needs in the least restrictive environment, including instruction conducted in the classroom, in the home, or even in hospital or institution settings.

Current law does not require a school district to pay for the cost of a child's education, including special education and related services, at a private school or facility if a free appropriate public education is available to the child and the care provider elects to place the child in the private school or facility. If a child is to attend a private school setting and requires requires special education services, parents and care providers will need to research the options available for the provision of these services.

The educational system, as well as the system of special education, is replete with myriad complicated laws, rules, and regulations. Parents and care providers are encouraged to ask questions of other parents, parent advocacy groups, teachers, administrators, and participate in workshops designed to keep the public informed about educational rights the child is entitled to receive, not only a free and appropriate public education but one that is enjoyable and rewarding to the child.
 
© 1999-2005 Prader-Willi California Foundation