Fraser Autism Resource Directory - For Individuals Birth through 11 For the Twin Cities Metropolitan Area
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® Fraser Autism Resource Directory For Individuals Birth through 11 For the Twin Cities Metropolitan Area 12th Edition www.fraser.org
TABLE OF CONTENTS Introduction 4 Autism Overview, Treatment and Therapies 5 Autism Defined 5 Autism and Its Related Disorders 5 The Causes of Autism 5 Diagnosing Autism 6 Treatments/Therapies 6 Auditory Integration Training 7 Behavioral Interventions 7 Communication 7 Diet 7 Medication 7 Music Therapy 7 Sensory Integration 7 Social Skills 8 Vision 8 Other Treatments 8 Evaluating Treatment Options 9 Principles of Evaluating Treatment of Autism 9 Questions to Ask Regarding Specific Treatments 9 Accessing Services for Your Child 10 Step 1: SCREENING 10 Step 2: EVALUATION/ASSESSMENT 12 Step 3: INTERVENTION/TREATMENT 12 Step 3A: FINANCIAL AND MEDICAL ASSISTANCE 13 Step 3B: CASE MANAGEMENT 13 Step 4: MONITORING YOUR CHILD’S PROGRESS 13 Finally: SUPPORT GROUPS 13 Paths to Evaluation 14 Paths to Eligibility for Services 15 Resource Information ® Fraser Autism Services 16 Assessment and Evaluation 17 Financial and Medical Assistance 19
Case Management/Service Coordination 23 Treatment and Intervention Agencies 24 Intervention/Methodology Descriptions 27 Therapy Service Providers 30 Healthcare Providers 35 PCA and Respite Resources 43 Life Planning 44 Advocacy and Support Services 45 Attorneys, Guardianship, Conservatorship and Trust Fund Resources 49 Adaptive Equipment Resources 51 Adaptive Equipment Products 52 Recreation Resources 53 Special Needs Child Care Agencies 54 Books, Videos, Web Sites 55 Dictionary of Autism Terms and Acronyms 57 Tell Us What You Think 62
INTRODUCTION This resource directory is for families and caregivers of young children with autism The resources included are for your spectrum disorders (ASD). information and do not constitute any recommendation or guarantee by Fraser. Whether your child is just beginning the assessment process or already receives Although the focus here is on young services, you undoubtedly will have children with autism spectrum disorders, the questions. You will get a lot of information service systems described apply to all young from many sources – perhaps too much children with special needs. information! It is time consuming and can be confusing to sort through and decide If you have comments, updates or ideas for what is best for your family. We hope that future revisions of this resource guide, this guide can be a valuable tool in your please mail them to: family’s journey. We also hope that having this information all in one source will Fraser ® provide you with more time for the 2400 West 64th Street important things in life – you and your Richfield, MN 55423 family. Email: firstname.lastname@example.org No single booklet can tell you everything This directory can also be found online at you need to know. In an effort to be http://www.fraser.org/Resources/Fraser- comprehensive but not overwhelming, this Expertise---Information information is intended to be a starting point. You will need to ask many questions along the way and should insist on answers that you understand. As you create partnerships with the people who specialize in services for young children with special needs, keep your child’s and family’s needs in mind. Ultimately, you are the case manager for your child and his/her best advocate. Please note that the county services in this document are outlined according to Hennepin County services and the school services are outlined according to Minneapolis Public School programs. If you live outside these boundaries, contact your area school district and county for help.
AUTISM OVERVIEW, TREATMENT AND THERAPIES Autism Defined Autistic Disorder –impairments in social Autism is a complex developmental disorder that interaction, communication, and imaginative typically appears during the first three years of play prior to age 3. life. The result of a neurological disorder that Asperger’s Disorder –impairments in social affects function of the brain, autism and its interactions and restriction in activities, but associated behaviors occur in an estimated 1 in 88 no significant language and cognitive delay. individuals.* Autism is more common in boys Rett’s Disorder –occurs only in girls; period than in girls – a rate of four to one. Race, of normal development (1-4 years), followed ethnicity, and social boundaries (family income, by loss of skills and replacement of use of lifestyle and educational levels) do not affect the hands with repetitive hand movements. chance of autism’s occurrence. Autism affects the Childhood Disintegrative Disorder –normal normal development of the brain and results in development for 2 years, followed by difficulties with verbal and non-verbal significant loss of skills. communication, social interactions and leisure or Pervasive Developmental Disorder –Not play activities. In some cases, aggressive or self- Otherwise Specified –known as atypical injurious behavior may be present. Individuals autism; does not meet criteria for the other with autism may exhibit repeated body four categories of PDD, but severe movements, unusual responses to people or impairment in behavior is present. attachments to objects, resistance to changes in routine, and sensitivity to any of the five senses: The Causes of Autism sight, hearing, touch, smell and taste. More than Although a specific cause of autism is not 500,000 people in the U.S. have autism or some known, current research links autism to form of pervasive developmental disorder, biological or neurological differences in the making it one of the most common developmental brain. A pattern of autism or related disabilites disabilties. in families suggests there is a genetic basis to the disorder, most likely involving several genes in Autism and Its Related Disorders combination. Research also indicates there may Autism is a spectrum disorder, where symptoms be an environmental contribution to autism. The and characteristics can present themselves in a differences between children with this diagnosis wide variety of combinations, from mild to indicate there are likely several paths to a severe. A diagnosis, which is based on diagnosis of autism. Autism is not a mental observation and parent consultation, is made illness, not caused by bad parenting, and no when a specified number of characteristics listed known psychological factors in the development in the Diagnostic and Statistical Manual IV of the child have been shown to cause autism. (DSM-IV) are present. In the DSM-IV, several disorders fall under the broad heading of Pervasive Developmental Disorder (PDD), a *Centers for Disease Control and Prevention 2012. In the original category of disorders characterized by severe and article (1997), this statistic was 1 in 500 according to the CDC. T his pervasive impairment in several areas of represents a 78% increase. development (American Psychiatric Association 1994). While the DSM-IV uses the broad term of PDD, the community at large refers to this category as Autism Spectrum Disorders. The major diagnoses included in the Pervasive Developmental Disorders include:
Diagnosing Autism Treatments/Therapies Autism diagnosis is based on observation of In the medical sense, there is no cure for the the individual’s communication, behavior differences in the brain which result in and developmental levels. While there is no autism. However, a better understanding of medical test for autism, various medical the disorder has led to the development of tests may identify or rule out other possible better coping mechanisms and strategies for causes of exhibited symptoms. Diagnosis is the various manifestations of the disability. difficult and should be done by a multi- With appropriate intervention, many of the disciplinary team, which may include a behaviors associated with autism can be neurologist, psychologist, developmental positively changed. In some cases, the child pediatrician, speech/language therapist, or adult may appear to no longer have learning consultant, or another professional autism. However, the majority of children knowledgeable about autism. and adults will continue to exhibit some manifestations of autism to some degree throughout their lives. Evidence shows that Characteristics of Autism early intervention results in dramatically The following areas are among those that positive outcomes for young children with may be affected by autism. autism. Though they may emphasize Communication –delayed or no language different componenets, effective programs development; words with no meaning; all share an emphasis on early, appropriate gesture communication; short attention and intensive education interventions. span. Because autism is a spectrum and many Social Interaction –spends time alone; behavior combinations can occur, no one less responsive to social cues. approach is effective in alleviating Sensory Impairment –may have symptoms in all cases. The National sensitivity in sight, hearing, touch, smell Research Council* reviewed the and taste. effectiveness of a range of national Play –lack of spontaneous or programs and identified key components of imaginative play. intervention that contribute to successsful Behaviors –overactive or passive, outcomes: tantrums, may lack common sense, may Early entry into intervention show aggression, needs routine. Active engagement in intensive programing Some individuals with autism may have Repeated 1:1 intervention other disorders affecting the brain such as opportunities epilepsy, mental retardation, Down At least 1:2 ratio syndrome, and certain genetic disoders. Evaluation of progress with Many people diagnosed with autism will appropriate adaptations. also test in the range of mental retardation and 25-30 percent may develop a seizure To be effective, an approach should be pattern. flexible, rely on positive reinforcement, be re-evaluated regularly and provide a smooth Contrary to popular understanding, many transition from home to school to children and adults with autism make eye community environments. contact, show affection, smile and laugh, and demonstrate a variety of other emotion, *National Research Council (2001). Educating Children with Autism, Committee on Educational Interventions for although in varying degrees. Like other Children with Autism. C. Lord & J. M cGee (eds.) children, they respond to their environment Washington DC: National Academy Press. in both positive and negative ways.
The following is an overview of treatment communication boards or sign systmes may options available for individuals with be used to help the person communicate autism. This is not an exhaustive list and is more effectively. intended only to provide a general overview rather than specific treatment Diet recommendation. Contact the Autism Although no rigorous scientific studies Society of America for additional support the idea that dietary modification information on any of these treatment reduces or eliminates symptoms of autism, approaches. some professionals and parents have reported changes in a child’s behavior. In a modified diet, substances such as yeast and Auditory Integration Training The technique of auditory integration gluten may be eliminated. Vitamins and training may help some individuals who are supplements have also been reported by some parents to affect particular behaviors oversensitive or hypersensitive to sound. This therapy involves the individual (such as attention span). listening to a variety of different sound frequencies, coordinated to their level of Medication impairment. Auditory training is performed While no one medication is used to treat autism, some medications are prescribed to by an audiogist trained in this particular method. alleviate specific characteristics such as aggression, seizures, hyperactivity, obsessive/compulsive behavior or anxiety. Behavioral Interventions For information on specific medications, Techniques to deal with the behavioral consult a developmental pediatrician or manifestations of autism are part of many psychiatrist with experience in treating treatment programs. Some programs focus autism. on inappropriate or challenging behaviors, and may include different types of behavior Music Therapy techniques meant to determine the cause of the behaviors and/or replace them. Other Music therapy incorporates music into the teaching of cognitive, motor and daily living programs may be based on learning new skills such as communication or object skills. It may be provided in a private setting or included in a child’s educational program recognition. Behavior programs may be and can be effective treatment for some carried out across home, school and work environments. people with autism. Sensory Integration Communication One of the main areas affected by autism is An area of difficulty that may be less obvious an individual’s ability to communicate. but prevalent in individuals with autism, is the integration of sensory messages. Some Many treatment programs include methods to increase communication skills. To individuals have unusual reactions such as being overly sensitive to touch or under- determine the communication needs of your child, you may want to seek an evaluation responsive to pain. Sight, hearing, touch, from a speech language pathologist with smell and taste may be affected at various degrees. Noises may sound too loud or too knowledge of autism. Speech therapy can address receptive language or understanding soft and colors may appear bright or painful. Different treatments are available depending expressive language, speech production and social interaction or pragmatic skills. on the particular sensory system that is Alternative or augmentative options such as affected. electronic communication devices, picture
Social Skills One of the main characteristics of autism is a lack of social ability or the understanding of social cues. Individuals with autism may spend time alone rather than with others, show little interest in making friends and be less responsive to social cues such as eye contact or facial expression. Social skills programming may include such diverse techniques as helping individuals with autism learn to recognize facial expressions and emotions, communicate in social situations or wait calmly in line (such as at the grocery store). As with other autism treatments, social skills programming varies depending on individual need. Vision Some individuals with autism experience vision difficulties, such as poor eye contact, difficulty attending visually, visual fixation, and hyper- or hypo-sensitivity to light or color. Developmental or behavioral optometrists may be able to treat individuals who experience vision difficulties. These professionals believe that some of the unusual behaviors associated with autism may be related to visual-perceptual problems. Treatment may include specialized colored or prism lenses or practicing vision exercises. Other Treatments The treatments mentioned above are not a comprehensive list of all options available to individuals with autism. There is a variety of other options including animal therapy, anti- yeast therapy and cranial sacral therapy, to name a few. Due to the incredible number of interventions described for ASD, a disorder with unknown cause, it is important to review your child’s needs, consider interventions that include researched strategies and do not have potentially harmful side effects. Pages 4-7 appear as printed in the January-February 1999 issue of Advocate, a publication of the Autism Society of America, with updates as appropriate.
EVALUATING TREATMENT OPTIONS Principles of Evaluating Treatment of Autism Questions to Ask Regarding Specific 1. Approach any new treatment with hopeful Treatments skepticism. Remember that the goal of any 1. Will the treatment result in harm to my treatment should be to help the person with child? autism become a fully functioning member 2. How will failure of the treatment affect my of society. child and family? 2. Beware of any program or technique that is 3. Has the treatment been validated touted as effective or desirable for every scientifically? person with autism. 4. Are assessment procedures specified? 3. Beware of any program that thwarts individualization and potentially results in 5. How will the treatment be integrated into the harmful program decisions. child’s current program? Do not become so infatuated with a given treatment that 4. Be aware that any treatment represents one functional curriculum, vocational life and of several options for a person with autism. social skills are ignored. 5. Be aware that treatment should always depend on individual assessment information that points to it as an appropriate choice for a particular child. 6. Be aware that no new treatment should be implemented until its proponents can specify assessment procedures necessary to determine whether it will be appropriate for an individual with autism. 7. Be aware that debate over use of various techniques is often reduced to superficial arguments over who is right, moral and ethical and who is a true advocate for the children. This can lead to results that are directly opposite to those intended. 8. Be aware that often new treatments have not been validated scientifically. From Dr. B.J. Freeman, Diagnosis of the Syndrome of Autism: Questions Parents
ACCESSING SERVICES FOR YOUR CHILD A child with autism may qualify for a range the assessment procedures are similar, they of services. Here are some of the steps you are not exactly the same. Many parents must take as well as some steps you may report feeling like everyone wants the same wish to take to access services. As you information and that they must answer the navigate the system, it is important to same questions repeatedly. They also understand that there are two separate but question why their child has to take a test related paths: education-based services and similar to one already taken. It may help to mental health related services. You may find know that the people working in both yourself on one or both of these paths. systems want the best possible programming for a child. While they are sympathetic to Education-based services are delivered parent frustration and stress, they are through local school districts. Children who following procedures they cannot change. are identified as needing special education services receive appropriate programming Here are the basic steps of accessing free of charge. State law requires this for services for any child with special needs. children under age 3 and federal law The entry point may vary for each child and requires it for children ages 3 to 22. family. Mental health related services are typically Step 1: SCREENING delivered through clinics and human service The first step toward education-based agencies. Payment usually comes through services is to have your child screened by private or public health insurance through 612-348-TOTS (if in Minneapolis) or your mental health benefits provided that the local school district. All children must be child has a medical diagnosis. Families screened before entering the Minneapolis sometimes pay a portion of the cost. Public School system. This usually is done around age 4. If you are concerned about Medical interventions typically target a your child’s development, you should have particular area (sleep, diet, seizures, etc.) A this screening done much earlier, at age 2 or medical diagnosis of ASD may guide a even younger. If the people who screen your pediatrician to make additional referrals child think there is a reason for further such as to a neurologist due to increased testing, they will refer you to the public possibility of seizures or for genetic testing schools. Screening and referral statewide to determine a cause for the behaviors. can occur through MCSHN (MN Children Rehabilitative services such as speech or with Special Health Needs) through the occupational therapy are common referrals a department of health 1-800-728-5420. physician may make for a child with ASD. Screening for mental health and medical Access to Community Services often services often starts with a family’s health requires a medical diagnosis plus additional care provider. Well-child check-ups should cognitive and adaptive functioning testing. include screening performed by a nurse or If criteria are met, a child may receive doctor who knows about typical financial help or supportive care services. development. If there is cause for concern, clinicians can refer to the appropriate Children must qualify for each type of specialist for further testing. This step is service according to predetermined necessary if you want your insurance standards. One of the greatest sources of provider to pay for the next step. Screening frustration reported by parents is trying to for community services often requires the understand how the systems relate. Though medical evaluation to be completed.
Special Ed Eligibility Educational ASD Educational Plans Services IEP Speech Therapy Occupational Therapy 504 Plan Adaptive Phy. Ed Community Educational Mental Health Services Label Interventions TEFRA Family Therapies Waiver Medical Skills Training PCA Diagnosis Respite Private Rehab Transition Speech Therapy Planning Occupational Vocational Housing Therapy (OT) Medical Community supports, Guardianship Interventions Neurology Nutrition Genetic Testing
Step 2: EVALUATION/ASSESSMENT the diagnosis than someone who specializes (see Resource Sheet A) in autism, seeing several clients each day. If your child is referred to the Minneapolis This does not mean, however, that treatment Public Schools for assessment, a team of should be delayed. Identifying and educators conducts an assessment over the diagnosing autism early can provide access course of several days (see pages 11-13). to appropriate services that result in a better The team uses a statewide standard to prognosis. determine if your child qualifies for an educational label to receive services through Step 3: INTERVENTION/TREATMENT the schools. The team must meet with you to If your child does not meet the criteria for an discuss the outcomes of their evaluation and autism spectrum disorder (or some other the evaluation must be completed within category) no further treatment will likely be certain timelines. Someone on the team will authorized. discuss these deadlines with you. If they do not, you should ask. If an educational or medical label is given to your child, the evaluators will make You may wish to seek a medical diagnosis recommendations and referrals for programs for your child. A medical diagnosis is and services available in your community. required before any health insurer will You are responsible for looking into these consider paying for mental health related programs and for paying any required fees. treatment. It may also be helpful in qualifying for services through the public There is no cure for autism and no single, schools. A psychologist or psychiatrist who perfect treatment. There are many types of specializes in working with children with interventions for children with ASD. developmental differences must perform this Information from educators, mental health type of evaluation. As with an educational professionals, health professionals, other label, very specific criteria are used to parents, books and organizations can be determine which diagnosis is appropriate for contradictory and confusing. It is your job to your child. You should expect the evaluators work with the people providing evaluation to meet with you to tell you the results of and services to find the best fit for your your child’s evaluation. You can have child. Ask as many questions as you need in anyone present at these meetings that you order to understand the options. Note that choose. For example, you may want a not all interventions are covered by school, friend, advocate, your childcare provider or insurance or county support. Most families an interpreter to be present when you end up developing a menu of services to discuss next steps for your child. meet their child’s individual needs. (For a brief description of various types of The evaluation and assessment process can treatments, refer to Resource Sheet E.) be lengthy and tiring. Very young children can be difficult to test, especially if they Some features are unique within the systems have limited language or behaviors that serving children with special needs. Public make it difficult to respond. This can be schools focus on educational goals for particularly true for children who show kindergarten readiness and mental health autistic- like symptoms. It is not uncommon services focus on broader skills involved in to take several months or longer to pinpoint coping. Early intervention looks at how a specific diagnosis. One reason is that the children put all of their skills together in science of working with these children is everyday life. A survey of a 100 Fraser® always evolving. Another reason is that the clients indicates, on average, families enlist diagnosis of autism is subjective, based on in seven intervention services to meet the behaviors. A clinician who sees a few clients needs of their child. with ASD may have a very different view of
Step 3A: FINANCIAL AND MEDICAL state law, the IFSP must be reviewed ASSISTANCE periodically (at six months and then yearly) There are very separate sources of funding by the team that created it. Your child’s for interventions. Public school programs progress will be reviewed and new goals identified as appropriate for your child are may be established. You are an important provided at no cost to you. Mental health part of the team and can have anyone services are paid for through health present at team meetings that you wish. insurance and/or your own payments. You may want to know about the financial and Treatment goals are also agreed on for medical assistance options available to children receiving mental health related children with special needs. Often, they services. The people providing services in must be applied for and approved before this setting will initiate an Individual services begin. The application process can Treatment Plan (ITP) that outlines goals. be tedious and confusing with complicated You should be part of this process. The ITP eligibility requirements, lots of paperwork guides the interventions your child receives and specific financial costs/benefits (if you and is used by insurance providers to take one kind of benefit, you sometimes lose authorize payment for services. ITPs are eligibility for another kind). Some very also periodically reviewed on a timeline basic information is presented in Resource determined by the insurer. This typically Sheet B. Be sure you know all the pros and happens more frequently than the IFSP, cons of any assistance program before you sometimes monthly. You should be involved sign up for it. Ask as many questions as you in this process as much as you want to be. need in order to understand the issues. Finally: SUPPORT GROUPS Step 3B: CASE MANAGEMENT Many families report that the most important You may want to explore available case step they take is to develop a strong support management programs. Case management system. Research indicates the challenges of services assist you with coordinating parenting a special needs child increases the services for your child and family and often overall stress on the mental health of are the gatekeepers for a number of services parents, siblings, and the marital (such as access to respite care and some relationship. Some references list the types of financial assistance). Case divorce rate as high as 80 percent in families management programs are further outlined with children with ASD. For that reason, in Resource Sheet C. individual or marital counseling can be essential. There are a number of support Step 4: MONITORING YOUR CHILD’S groups and programs specific to autism PROGRESS available throughout the metro area. These If your child has qualified for Early groups provide contact with other families Childhood Special Education (ECSE) who are going through, or have gone services through the public schools, you are through, similar experiences. They can be an automatically part of a team that decides the excellent source of information, contacts and best kind of programming for your child. emotional support (see Resource Sheet H). An Individual Family Service Plan (IFSP) or Other family supports include Personal Care Individual Education Plan (IEP) will be Attendants (PCAs) and respite care (see completed (IFSPs are for younger children; Resource Sheet G). In most cases, you will IEPs for older children). These documents need to have financial and medical outline the services your child will receive assistance in place to access these services. through the public schools. Be sure that you You may, however, begin to explore these are included in the process to create the support options while you are applying for IFSP, understand the goals, and that you assistance. approve and sign the form. According to
PATHS TO EVALUATION Entry into services is based on both referral concerns and the eligibility criteria collected in the evaluation process for each system of service and funding. Fraser Autism Resource Directory, page 14 www.fraser.org
PATHS TO ELIGIBILITY FOR SERVICES Fraser Autism Resource Directory, page 15 www.fraser.org
Fraser® Autism Services Fraser provides diagnosis, treatment and support for children with autism and their families. We partner with each family to determine which strategies are most effective and which services are the best fit. Our approaches feature customized behavioral, psychological, medical, educational and social-based strategies. For more information, contact our intake department at 612-331-9413 or visit www.fraser.org. Fraser evaluations can provide a medical diagnosis, determine appropriate interventions or determine a child’s progress. Preschool Day Treatment provides intensive therapeutic intervention in the areas of communication, interaction, behavior and learning. Adolescent Asperger’s Clinic provides individual therapy, group therapy and skills training focusing on building self-esteem and coping skills to enable children to remain in their mainstream school settings. Skills Training Groups help children develop and use appropriate social skills within small peer groups. Skills Training (individual or family) focuses on improving specific skills important to the child’s daily- living activities and participation in the community. Visual Consultations Fraser Visual Consultation services assist families in designing visual supports and environments that promote effective self-management systems, enhanced communication and meaningful social relationships. These consultations are for pre-school aged children through young adults on the autism spectrum. Transition Consultations work with individuals and their families to better understand and address the key areas of the Transition to adulthood: education, employment, community living and community integration. Behavioral Aide services focus on goals from a child’s individual behavior plan that help to replace inappropriate behaviors with developmentally and therapeutically appropriate daily-living skills, social skills, leisure and recreational skills. Therapy (individual child, group and family therapies) address the social-emotional needs of children and their families. Therapy promotes adaptive coping skills, decreases at-risk behaviors, and improves overall functioning in the family. Occupational and Physical Therapies can help children build fine and gross motor skills; learn self-care skills (like dressing and feeding); and overcome sensory challenges (such as extreme sensitivity to touch). Feeding Evaluation and Therapy help children who have problems eating to overcome oral sensory challenges and swallowing difficulties. Speech-Language Therapy can help children develop understanding and expression of language. Music Therapy enhances social/emotional, cognitive/academic and fine/gross motor skills. Personal Care Assistance provides individuals with support services deemed necessary by a physician. (For information on this service, call 612-767-5150.) Home-Based Respite Care provides temporary care for a child within the family’s home to alleviate family stress caring for the child. (For information on this service, call 612-767-5150.) Fraser School® is an inclusive early childhood center providing infant, toddler and preschool programs; and rehabilitation and health services. (For information on Fraser School, call 612-861-1688.) Fraser is the founder and sponsor of Fraser Academy® an inclusive public elementary school with individualized learning plans to meet the unique needs of each student. (For information on Fraser Academy, www.fraseracademy.org or call 612-465-8600.) Fraser Autism Resource Directory, page 16 www.fraser.org
Assessment and Evaluation Educational Label A team of public school educators will evaluate your child to determine his/her eligibility for special education services. Criteria for all special education categories, including autism spectrum disorders, are spelled out in the Education State Criteria used across Minnesota. If your child has been diagnosed with an autism spectrum disorder from an outside clinician, the educational criteria still needs to be confirmed by the school team using the education state criteria. Purpose: the purpose of an educational label is to help parents and educators understand how the child learns and to give insight to behavior and disorder. A label of ASD can also open the door to additional supports and services. Criteria Type of Agency Assessment Team Contact Person Assessment Process Home-based assessment School District Licensed school psychologist, special Contact MN Help Me 1. MN Help Me Grow makes a referral to (Birth to 3 years of age) Early Childhood Special education teacher, speech therapist, Grow to find your School District for screening and Education (ECSE) occupational therapist, autism local referral source assessment. specialist and parent. http://www.parentskno 2. Assessment completed by school team. w.state.mn.us/parentsk If no medical diagnosis exists, referrals Staff involvement may include now/Newborn/HelpM may be made to a school psychologist for formal testing and/or record review. eGrow_SpecialNeeds/ evaluation for an educational label of The level of staff involvement ReferChild/index.ht ml autism. depends on the needs of the child. ?redirectNodeId=New 3. Assessment team determines the child’s born 1-866-693- eligibility for ECSE services. GROW (4769) 4. A team meeting is held with family and a written plan (IFSP) is developed. Anoka Help Me Grow: 763-323-5437 School District Licensed school psychologist, special Contact MN Help Me 1. MN Help Me Grow makes a referral to Center-based assessment Early Childhood Special education teacher, speech therapist, Grow to find your School District for screening and (Age 3 by September 1 Education (ECSE) occupational therapist and parent. local referral source assessment. through kindergarten) http://www.parentskno 2. Assessment team observes child in w.state.mn.us/parentsk natural environment (home, preschool) now/age3_5/index.htm 3. Assessment team determines eligibility l for services and placement options. 1-866-693-GROW 4. Team meeting is held with the family and (4769) a written plan (IEP) is developed. Fraser Autism Resource Directory, page 17 www.fraser.org
Medical Diagnosis A medical diagnosis is assigned by a psychologist or psychiatrist who specializes in working with children with developmental differences. Criteria established by the psychological and medical community are used to support diagnoses within the broad category of Pervasive Developmental Disorder, which includes autism. Purpose: a medical diagnosis of autism may lead to recommendations for a broad range of interventions beyond the educational realm. These may include referrals for neurologists, private rehabilitation services, county social services, financial support, family support and guidance, therapy, etc. Agency Assessment Team Contact Person Assessment Process Fraser Team of mental health Intake coordinator 1. Parents and child attend three-hour www.fraser.org professionals and autism (612) 767-7222 multiple assessment at the center. specialists locations 2. First hour is spent interviewing family. 3. Second hour, testing/observation/ interview 4. Last hour, findings and recommendations are shared with the family. The Alexander Center – Psychologist, M.D., therapists 952-993-2498 1. Assessment of children with Park Nicollet developmental and behavioral disorders. www.parknicollett.com/Alexa 2. Consultation with schools, individual ndercenter/ family counseling and education. University of Minnesota Psychiatrist, psychologist, M.D. 612-625-7466 Provide assessment and diagnosis. Autism Spectrum and www.med.umn.edu/peds/cl Neurodevelopmental inneuro/home.html Disorders (ASD) Clinic Sheila Merzer & Associates Licensed psychologists 952-928-7811 Provide assessment and diagnosis. Dr. Raymond Tervo Developmental Pediatrician 651-291-2848 Provide assessment and diagnosis. Dr. Kim McConnell Gillette Children’s www.gillettechildrens.org 200 E. University Ave. St. Paul, MN 55101 Counseling Psychologists of Psychologists 7582 Currell Blvd, # 108 Assessment, therapy, social skills Woodbury, P.A. Woodbury, MN 55125 Robin McLeod, PhD, LP (651) 739-7539 www.cpwmn.com Fraser Autism Resource Directory, page 18 www.fraser.org
Financial and Medical Assistance Applying for developmental disability care management services is key to accessing other disability services. Counties are responsible for determining eligibility for disability programs and most start their screening process through a telephone call. When contacting your county, requesting a developmental disability screening and developmental disability case management is a helpful starting point. Financial & Description Benefit Eligibility Contact/application process Medical Assistance Private Insurance Coverage received as benefit Benefits vary based on the plan. Eligibility is dependent on group coverage. Contact your employer’s human of employment. Private Refer to provider for details. Refer to provider for details. resource department or call the insurance always acts as the number on the back of the primary funding source. insurance card. SSI Monthly income for your Maximum benefit amount is $500 Disability must be medically verified and Call the Social Security child with a disability per month. result in major limitations in two broad Administration at areas of functioning or extreme limitations 1-800-772-1213 (TTY: 1-800- in one area of functioning. 325-0778). Process may take Condition must last or be expected to last at 3-4 months but eligibility goes least 12 months or be expected to result in back to the date of application. death. Families should start the Family income guidelines must be met. application process even if all Family assets are considered the information is not available Usually if a child is eligible for (e.g. doctor reports) AFDC/TANF, he/she would be eligible for Check www.db101 or SSI, but cannot receive both. Family http://www.ssa.gov/ssi/ for more chooses the best option. information TEFRA Option Medical Assistance coverage Examples of covered expenses: Eligibility criteria used is the same as SSI. Contact DHS at 651-431-2670 or under Medical for your child with disability inpatient/outpatient care The level of care needed must be similar outside of Metro: 800-657-3739 Assistance (MA) residing at home. Eligibility medical transportation but cannot exceed what would be provided Web site: is based only on your child’s prescribed drugs in a medical facility. http://www.dhs.state.mn.us/main/ income and assets. therapies Parent’s income is used to determine a idcplg?IdcService=GET_DYNA prosthetic devices monthly fee amount that is applied toward MIC_CONVERSION&RevisionS eyeglasses the cost of MA and county services. A electionMethod=LatestReleased& audiology worksheet is available to estimate the dDocName=id_007117 parent fee. For disability determination dental care laboratory and X-ray If fees go over the actual cost of services, through the State Medical Review they are applied toward the next year’s Team contact 651-431-2670 or health insurance premiums outside of Metro: 800-657-3529 parent fee. home health ordered by physician: private nursing, PCA, medical supplies and equipment, diapers for children over 4. hospice care Fraser Autism Resource Directory, page 19 www.fraser.org
Financial & Description Benefit Eligibility Contact/application process Medical Assistance Medical Assistance Medical Assistance for your Covered expenses are the same as Families complete an MA application to To apply or for more information: (MA) child/family based on your TEFRA. Examples of covered determine eligibility. If your child is eligible Hennepin County 612-348-4500 family’s income. expenses: for SSI he/she is also eligible for MA. (Children Birth-5 contact 612- Developmental inpatient/outpatient care 348-TOTS) Disability Intake medical transportation Families who are eligible for MA may also be Anoka County 763-422-7176 Lines (County) prescribed drugs eligible for WIC, but families need to Ramsey County: 651-266-4500 therapies complete separate WIC application. Dakota County: 651-554-6000 prosthetic devices Carver County: 952-361-1693 eyeglasses Web site: audiology http://www.dhs.state.mn.us/main/ idcplg?IdcService=GET_DYNA dental care MIC_CONVERSION&RevisionS laboratory and X-ray electionMethod=LatestReleased& health insurance premiums dDocName=id_006254 home health ordered by physician such as private nursing, PCA, medical supplies and equipment, diapers for children over 4. hospice care Minnesota People with limited English DHS multilingual telephone DHS Multilingual Referral Lines 651-201-3650 Children with proficiency can now use the referral lines operate in 10 Arabic - (800) 358-0377 1-800-728-5420 Special Health TTY: 1-800-627-3529 Minnesota Department of languages -- Arabic, Hmong, Hmong - (888) 486-8377 Needs (MCSHN) Human Services' multilingual Khmer (Cambodian), Laotian, Khmer (Cambodian) - (888) 468-3787 telephone service numbers to Oromo, Russian, Serbo-Croatian Laotian - (888) 487-8251 Children and Youth with Special Health Needs access early childhood (Bosnian), Somali, Spanish, Oromo - (888) 234-3798 programs and services. Minnesota Department of Health Vietnamese -- and are owned by Russian - (888) 562-5877 DHS and operated by contracted Serbo-Croatian (Bosnian) - (888) 234-3785 85 East Seventh Place / P.O. Box 64882 vendors. People who speak little or Somali - (888) 547-8829 St. Paul, MN 55164-0882 no English can reach someone who Spanish - (888) 428-3438 speaks their language (live or voice Vietnamese - (888) 554-8759 mail) and be referred to the E-mail: appropriate state or county human email@example.com services provider. There is no cost FAX: 651-201-3655 to use these lines. Web site: http://www.health.state.mn.us/mc shn Fraser Autism Resource Directory, page 20 www.fraser.org
Financial & Description Benefit Eligibility Contact/application process Medical Assistance MN Care Assists in payment for Monthly premium is based on Qualifications: 651-297-3862 or 1-800-657-3672 medical, dental and income and family size. Permanent resident of Minnesota. TTY: (800) 627-3529 or 711 preventative care. Not eligible for MA Or write: May be a co-pay when you receive Not covered by any other health insurance MinnesotaCare health care services. for the last four months. PO Box 64838 Unable to get health insurance that is at St. Paul, MN 55164-0838 least half paid for by your employer for the Web: www.dhs.state.mn.us/main/ last 18 months. idcplg?IdcService=GET_DYNA Meet the MN Care income guidelines MIC_CONVERSION&RevisionS electionMethod=LatestReleased& dDocName=id_006255 MA Waivers The state of Minnesota has Coverage same as MA, plus: Must have an unmet service need. MA Waivers are administered obtained approval from the case management through the county and the child federal government to waive respite care Available to people with cognitive disabilities must be assessed through the Home and certain Medical Assistance homemaker services and related conditions. Developmental Disabilities community-based eligibility requirements for in-home family support Parent income is not considered in Division. In Hennepin County, to services for people who would like to assistive technology determining eligibility, but there is a parental begin the process for children persons with remain at home but are being day habilitation fee for services. birth to 3, contact 612-348-4500. mental retardation placed in, or are at risk of supported living services (SLS) and related being placed in institutions or For children 3-18, contact the environmental modifications conditions long-term care facilities. Hennepin County Developmental and others (Title 19 Waiver) Disabilities Division Intake 612- 348-4500. Web: http://www.hennepin.us/portal/sit e/HennepinUS/menuitem.b1ab75 471750e40fa01dfb47ccf06498/?v gnextoid=4bb0e6e5dea34210Vgn VCM10000049114689RCRD or http://www.dhs.state.mn.us/main/ idcplg?IdcService=GET_DYNA MIC_CONVERSION&RevisionS electionMethod=LatestReleased& dDocName=id_003726# Fraser Autism Resource Directory, page 21 www.fraser.org
Financial & Description Benefit Eligibility Contact/application process Medical Assistance Family Support The Family Support Grant Grants must be spent on services Annual adjusted gross income not to MA Waivers are administered Grant Program program provides state cash and items directly related to caring exceed $96,566. through the county and the child grants to families of children for the child’s special needs. Child must be determined by a case must be assessed through the with certified disabilities. (Expenses above the normal costs manager to be at risk for out-of-home Developmental Disabilities The goal of the program is to of caring for the child if he/she did placement to a licensed residential Division. In Hennepin County, to prevent or delay the out-of- not have a disability may be program. begin the process for children home placement of children covered.) Average limit for a monthly payment is birth to 3, contact 612-348-4500. with disabilities and promote $250. For children 3-18, contact the family health and social well- The number of available Family Must have a DD or MH Case manager. Hennepin County Developmental being by facilitating access to Support Grants is limited. Disabilities Division Intake 612- family-centered services and 348-4500. supports. Families cannot receive services Web through both the Family Support http://www.hennepin.us/portal/sit Grant and the DD Waiver or PCA. e/HennepinUS/menuitem.b1ab75 471750e40fa01dfb47ccf06498/?v gnextoid=4bb0e6e5dea34210Vgn VCM10000049114689RCRD or http://www.dhs.state.mn.us/main/ idcplg?IdcService=GET_DYNA MIC_CONVERSION&RevisionS electionMethod=LatestReleased& dDocName=id_003726# Child Respite Cash grant to families to be Adjusted gross income not to exceed $70,500. Family must have an open case in Grant used to pay licensed or non- the Developmental Disabilities licensed providers. Division. Consumer Support Provides a monthly support More flexible ways to use funding • Be recipients of or eligible for Medical Contact your local county Grant (CSG) grant to offset costs related to – can fund special diets, parental Assistance Developmental Disability Intake. the recipient’s disability. care, adaptive clothing, therapeutic • Be eligible to receive home care services This program is an alternate horseback riding, music or art from the Medical Assistance Home Care Hennepin: 612-348-4500 to PCA services, so client therapy and family counseling. Program must be eligible for PCA or • Demonstrate limitations in everyday http://www.dhs.state.mn.us/main/ get the screening for PCA. functioning, such as, self-care, language, idcplg?IdcService=GET_DYNA learning, mobility, self-direction, capacity for MIC_CONVERSION&RevisionS independent living and economic self- electionMethod=LatestReleased& sufficiency dDocName=id_004735 • Require ongoing supports to live in the community • Live in a natural home setting Must be eligible for PCA & MA • A parent must attend one of the monthly trainings and complete the 4 page plan. Fraser Autism Resource Directory, page 22 www.fraser.org
Case Management/Service Coordination Agency Description Benefit Eligibility Contact/application process Hennepin County A county social worker (DD The DD worker helps families apply Hennepin County Residents - Call Aging and Disability Developmental worker) is assigned as case for respite care, waivered services dependent on needs, program and Services (ADS) Initial Disabilities (DD) manager and assists children with and family support grants (services income. Medical Assistance is Consultation at 612-348-4500. Division significant developmental received based on eligibility criteria needed to qualify for some but Email: hsph.ads.icteam@ disabilities and their families with and availability of funds). DD worker not all programs. Generally tested co.hennepin.mn.us accessing and coordinating social also provides advocacy, support and IQ score of 70 or below. services. ideas for community resources. www.co.hennepin.mn.us Hennepin County This is the central intake referral Case managers consult with families Minneapolis resident under the To begin the eligibility process, Birth to 3 Program: source for early intervention and involved service providers age of 3 years with developmental call 612-348-4111 612-348-4111 services for children ages 0-3 in regarding the child’s medical, concerns; meets criteria for or Minneapolis. Provides early educational and social service needs. developmental delay or related Email Jane Auger childhood screening and Families are assisted in applying for conditions OR is placed in an at- Jane.Auger@co.hennepin.mn.us intervention assistance to families supportive services such as: financial risk category with documented with children who have or may be assistance programs, in-home and substantial delays on a at risk for developmental delays out-of-home respite care, home standardized assessment or disabilities. adaptations and counseling services. Minnesota Help Me If you have concerns about your Authorizes services for children Each type of service has specific http://www.parentsknow.state. Grow child’s development, call 1-866- under the age of 6, including: guidelines for authorization. mn.us/parentsknow/Newborn/H 693-GROW (4769) preschool day treatment Some have income guidelines, elpMeGrow_SpecialNeeds/Refe family-focused therapy some a sliding fee scale. Each rChild/index.html Once a referral is made to the respite care may have priorities if resources local early intervention program, subsidized day care are limited. the family will be contacted to arrange for a screening or evaluation to determine if your child is eligible for infant and toddler intervention or preschool special education services. Hennepin County All crisis services provided by a Consultation, crisis assessment, Hennepin County children and 612-348-2233 or Email: Child Crisis Services licensed mental health intervention and stabilization, adolescents who are experiencing HSPH.Frontdoor.Screener@co professional or by a mental health facilitation of psychiatric a mental health crisis. There is no .hennepin.mn.uso.hennepin.m practitioner under the clinical hospitalization charge for services. n.us supervision of a mental health professional. Minneapolis Public Work with staff and families to Offers a continuum of ECSE service Eligibility is determined through Rochelle Cox, ECSE Schools Early coordinate ECSE services/provide settings reflecting the natural screening at 612-348-TOTS, and Administrator 612-668-5104 Childhood Special advocacy for the child and family. progression of growth of children observation and evaluation Donna Asher, Birth to 5 Autism Education from infancy to preschoolers. These through Minneapolis Public 612-668-5102 settings are home based, community Schools. http://ecse.mpls.k12.mn.us/home based, center based, or autism classrooms. Fraser Autism Resource Directory, page 23 www.fraser.org
Treatment and Intervention Agencies Early Childhood Special Education Agency Services/Programs Contact Information Fraser ® Center-based ECSE services Fraser School Speech, occupational, music and physical therapies 2400 W. 64th St. Health services, respite care and home services Minneapolis, MN 55423 Inclusive preschool for children with typical or special needs 612-861-1688 www.fraser.org Minneapolis Public Schools Home-based intervention To begin intake process, contact 612-348-4111. Center-based ECSE classroom For program questions, contact the Director of Special Toddler and preschool center-based classroom for children who Education, Ann Fox, 612-668-5402 demonstrate autism spectrum behaviors Community preschool in a typical preschool setting www.mpls.k12.mn.us Other services may include speech and occupational therapy, depending on the needs of the child Day Treatment Agency Services/Programs Contact Information Fraser ® Includes one-to-one treatment sessions and group interventions in a Minneapolis: 3333 University Ave. S.E. Fraser Autism Program therapeutic setting. Psychology, occupational therapy, speech therapy Anoka: 2829 Verndale Avenue, Suite 3 and music therapy are integral components of the program. Separate Bloomington: 1801 American Boulevard East, Suite 1 programs are available for toddlers and preschoolers. 612-767-7222 www.fraser.org St. David’s Child and Family Center Includes one-to-one treatment sessions and group interventions in a 3395 Plymouth Rd. therapeutic setting. Psychology, occupational therapy, speech Minnetonka, MN 55305 therapy, and music therapy are integral components of the program. 952-939-0396 www.stdavids.net Inclusive Preschool Agency Services/Programs Contact Information Fraser School® Offers a variety of services for children, including integrated 2400 W. 64th St. preschool, rehabilitation services, health services, respite care, Ready Minneapolis, MN 55423 4K curriculum and home services for children with disabilities. 612-861-1688 www.fraser.org St. David’s Child and Family Center Offers a variety of services for children, including integrated 3395 Plymouth Rd. preschool and home services for children with disabilities. Minnetonka, MN 55305 952-939-0396 www.stdavids.net Fraser Autism Resource Directory, page 24 www.fraser.org
Behavioral Training Behavioral Training Agency Services/Programs Contact Information Autism Matters www.autismmatters.net Autism Matters, Inc. Minnetonka, Rogers Ph: 952-544-0349 Behavioral Dimensions Inc. Provides short and long-term consultation, counseling and therapy, 7010 Highway 7 IBI- intense behavioral intervention. St. Louis Park, MN 55426 952-814-0207 www.behavioraldimensions.com Behavioral Therapy Solutions of MN Evaluations, in-home ABA 700 Commerce Drive, Ste. 260 Woodbury, MN 55125 651-328-6280 www.btsofmn.com Brih Design, LLC Brih Design is a small, private consulting firm. They provide support 6066 Shingle Creek Parkway and services to people who exhibit difficult (to manage) behaviors. PMB 172 Brooklyn Center, MN 55430763-560-1614 firstname.lastname@example.org www.brihdesign.com Fraser ® Mental health practitioners provide short-term family, group or Fraser 3333 University Ave. S.E. individual skills training. Behavioral aides work one-on-one with a Minneapolis, MN 55414 child to improve skills and implement individual behavior plan goals. 612- 767-7222 This helps to replace inappropriate skills with developmentally and www.fraser.org therapeutically appropriate daily-living, social and recreational skills. Helena Family Support Autism Therapy Half-day therapy and skills training programs for children two to 5301 east River Rd. NE, Ste. 110 Center seven. Fridley, MN 55421 763-432-3926 www.minnesotaAutismTherapy.com Holland Center Center-base verbal behavioral intervention program. Also has a focus 10273 Yellow Circle Dr. Minnetonka, MN 55343 on gluten-free/casein-free diet. 952-401-9359 www.hollandcenter.com The Lazarus Project Center-based cooperative serving children 2-9 years old with 3021 Harbor Lane N Suite LL105, Plymouth MN intensive early intervention, applied behavior therapy. 55447 763-519-1197 www.lazarusprojectmn.org Lovaas Institute for Early Intervention Home-based ABA intervention program. LIFE Midwest Treatment Headquarters (LIFE) Midwest, Inc. Clinical Director: Eric Larsson, PhD 2925 Dean Pkwy., Suite 300 Minneapolis, MN 55416 612- 925-8365 www.lovaas.com Minnesota Autism Center (MAC) Services include behavioral therapy, home-based early intervention, Minnesota Autism Center 5 locations center based intervention and consultation with schools and other 5710 Baker Road agencies. Minnetonka, MN 55345 Office - 952.767.4200 www.mnautism.org Minnetonka, Eagan, Rochester, Woodbury, Mankato Fraser Autism Resource Directory, page 25 www.fraser.org
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