Pediatric Palliative Care Resources

Pediatric Palliative Medicine: Comprehensive care that focuses on improving quality of life and minimizing suffering in medically complex individuals.

By JANE LANG, BSN, RN. COREWELL HEALTH • HELEN DEVOS CHILDREN’S HOSPITAL PEDIATRIC PALLIATIVE MEDICINE

Jane is an RN with the Corewell Health Helen DeVos Children’s Hospital Pediatric Palliative Medicine Team, 35 Michigan St. NE, Suite 5301, Grand Rapids, Michigan 49503 jane. lang@corewellhealth.org

STATE RESOURCES:

Children’s Special Health Care Services (CSHCS): CSHCS helps persons 0-26 with chronic health problems by providing coverage for specialty services based on the person’s health problems. CSHCS covers more than 2700 physical conditions when certain criteria are met. Note: CSHCS does not cover primary care, developmental, behavioral, or intellectual conditions.

The CSHCS Family Center: Helps shape CSHCS policies and procedures and helps families navigate CSHCS. They offer health resource information and emotional support, camp & conference scholarships, and the Children with Special Needs Fund (CSN Fund). Enrollment in CSHCS is not required. Call the CSHCS Family Center Phone Line at 1-800-359-3722, or send an email to: cshcsfc@michigan.gov

Michigan Medicaid Waivers: http:// www.kidswaivers.org/mi / Because private insurance does not cover many services children with disabilities require, Medicaid waivers allow another pathway (versus family income) to access Medicaid services, including private duty nursing & specialized therapies. They may also offer additional services, such as respite & home/vehicle modifications.

Community Mental Health (CMH): Children and young adults with behavioral health or developmental disabilities and have Medicaid insurance may qualify for community living supports (CLS) and services, including respite, through their local Community Mental Health agency. Call your CMH Access Center & ask to be screened for services. The evaluation for the Children’s Waiver is a part of that screening.

The Family Support Subsidy (FSS): The subsidy provides a monthly payment (currently $300.36) that families must spend on special needs that occur because of caring for a child with a severe disability at home. This subsidy is dependent on family income. Call your local CMH & ask for the Family Support Subsidy Coordinator for additional information and to obtain an application. If you are unable to locate your county’s FSS Coordinator, you may call (517) 2415774 for assistance.

Michigan Alliance for Families: 1-800-552-4821 or http://www. michiganallianceforfamilies.org/ provides information, support, and education for families who have children (birth through 26 years of age) who receive (or may be eligible to receive) special education services. Each Michigan Alliance staff member is a parent or family member of an individual with disabilities. Families can connect directly to a regional Parent Mentor who can assist you in navigating the educational system and are knowledgeable about state and local resources.

Children’s Palliative Care Coalition of Michigan: Our mission is to provide resources for medical professionals, volunteers and families caring for children with complex and life-limiting illnesses, and to ensure the availability of compassionate, comprehensive care across the State of Michigan. https://www.childpalliative.org/

Epilepsy Foundation of Michigan: Offers a variety of educational, social, and supportive services to individuals living with epilepsy. Resources include their helpline, camp, conferences, events, and scholarships https://epilepsymichigan.org/

A Kid Again. Giving Illness a Time

Out: It provides consistent, cost-free, year-round adventures for children and their families, to remember what it was like to live carefree. Adventures are ALWAYS FREE for families! www.akidagain.org

Make-A-Wish Michigan: http://michigan.wish.org/about-us/ the-make-a-wish-story/our-mission

The Rainbow Connection https://www.rainbowconnection. org/# makes wishes come true for Michigan children with life threatening medical conditions. In addition, we provide support services to eligible wish families in need.

The Jenna Kast Believe in Miracles Foundation: Enriches the lives of Michigan children suffering from life-threatening medical conditions by buying gifts and bringing joy and hope to their lives. Along with their gift, each child receives a personalized trophy to acknowledge their courageous fight. http://www. believeinmiracles.org/

The Michigan Elks Association Major Project: Exists to help special needs children in the State of Michigan achieve their goals with funds to help with individual therapies, equipment, technology and more. michiganelksmajorproject.org

Michigan Kids on the Move at MI Kids On the Move: Home (weebly.com) offers powered ride on cars (ages 1-6) and manual mini-wheelchairs (8mo3y) to make sure all Michigan kids are on the move.

Diapers/Pullups: If your child is 3 or older (maybe even 2 yrs. old), has Medicaid insurance and is incontinent, he/she may qualify for diapers. Generally, if you have straight Medicaid, diapers are from J&B Medical Supply. With a Medicaid plan (PH, BCBS, etc.), diapers may come from local DME companies or J&B. Unfortunately, I have not heard of commercial insurances or CSHCS covering diapers/pullups.

The Charlie Waller Legacy Fund: Provides financial assistance to families facing financial difficulties due to having a child with a lifelimiting condition. Michigan residents may apply for a one-time grant. Because funds are limited, grant amounts are normally up to $1,000. See their website for details

CHARLIE WALLER LEGACY FUND | Childpalliative

Easterseals MORC: Comprehensive, multi-faceted services for families with children from birth to 18 years of age in Genesee, Kent, Macomb, and Oakland Counties. Easterseals MORC | Home

Special Needs Car Seat Clinics: Trinity Health Muskegon (231)-6726940, Secure Quest mysecurequest. com (Grand Rapids), Mott Children’s Hospital (Ann Arbor) 734-763-2251

WEST MICHIGAN RESOURCES:

Family Hope Foundation: Scholarships for therapy costs that are not covered by insurance. http:// thefamilyhopefoundation.org/

Caleb Smiles: Was formed to help children and families get access to fun activities (like adaptive skiing, horseback riding and swimming lessons), and equipment (like communication buttons and sensory items) that they may not have the budget for. www.calebsmiles.org

Lori’s Voice: https://lorisvoice. org/ The purpose of Lori’s voice is to provide equipment, educational resources, and medical assistance to children with neuromuscular, degenerative diseases, and mobility issues. Also, check out the Lori’s Voice Application for financial assistance for wheelchair body coats @ Lori’s VoiceX-Ability Store (xabilitystore.com)

Renew Mobility: https:// renewmobility.org/ Recycling, distributing, and maintaining mobility equipment (manual & power wheelchairs, walkers, bath aides, Hoyer lifts) for those in need. If you do not have insurance, your coverage does not meet your needs, or you have slipped through the cracks and do not have financial means we are here to help. Applications from West Michigan only please. The locations are in Grand Rapids and Muskegon.

Down Syndrome Association of West Michigan: https://www.dsawm.org the Down Syndrome Association of West Michigan strives to create communities that embrace Down syndrome, empower individuals, and promote opportunities for meaningful lives.

Easter Seals: http://www.easterseals. com/michigan/ or 616-912-2081. Therapies for children with developmental disabilities such as Autism Services (including The P.L.A.Y. Project), Sensory Integration, Speech and Language, and Occupational Therapies, summer camps, respite and more.

Calvin University Pediatric Speech and Hearing & Western Michigan University Pediatric OT: https:// calvin.edu/academics/departmentsprograms/speech-pathology-audiology/ speech-clinic/ under “Pediatric Services” The Speech & Hearing Clinic on campus offers adult and pediatric speech therapy, an augmentative & alternative communication (AAC) club, and a pediatric occupational therapy clinic in partnership with Western Michigan University.

Connect to Care: https://www. connectgr.org/about/ There are a variety of barriers that families face when securing hospitality housing for guests of children’s health services in Grand Rapids. Our goal is to be an organization that works to overcome the obstacles families face for securing hospitality housing.

Family Network of Wyoming

Family Network of Wyoming: Is a nonprofit organization that provides food, clothing, medical equipment, and other assistance to people in need. Our DME inventory includes crutches, walkers, canes, wheelchairs, bathroom aids, shower/bathtub seats, incontinent supplies 1029 44th St SW, Wyoming, MI 49509 · (616) 885-9919

NATIONAL RESOURCES:

Down Syndrome Diagnosis Network: https://www.dsdiagnosisnetwork.org Provides resources, education, and connection to other parents. It has an online network of over 50 parent subgroups based on, for example, medical diagnosis, interests, and birth year.

Love from L evi: Honors 4-yearold Levi and creates and provides customized interactive books to help kids get more comfortable with big and small hospital procedures. They proudly offer this book (customizable to each child’s unique medical journey) to all children with cancer or other serious illness free of charge. Love From Levi - Spreading Awareness, Love, and Hope

Jack’s Basket- Celebrating babies with Down syndrome! A Jack’s Basket is a complimentary gift for the family of a baby diagnosed with Down syndrome. The baskets are provided anytime from diagnosis (prenatal or at birth) up to the baby’s first birthday. https://www. jacksbasket.org/, also, on Instagram.

SOFT Support Organization for Trisomy 18, 13 & Related Chromosome Disorders https:// trisomy.org/, also, on Facebook.

The National Organization for Rare Disorders (NORD): Helps people living with rare diseases meet the daily challenges in their lives so they can achieve their best health and well-being. Their Patient Assistance Programs help with financial assistance, caregiver aid, and educational support. Financial Assistance For Patients With Rare Diseases | NORD

Hope for HIE (Hypoxic Ischemic Encephalopathy): Is deeply committed to providing comprehensive, personalized support for each family’s journey. Our community is worldwide and represents a variety of outcomesfrom unaffected through loss. https://www.hopeforhie.org/, also, on Facebook.

The Songs of Love Foundation: Is a national nonprofit 501(c)(3) organization that creates free, personalized, original songs to uplift children and teens currently facing tough medical, physical or emotional challenges. https://www.songsoflove.org/

UnitedHealthcare Children’s Foundation: https://www.uhccf.org/

Our mission is to improve children’s lives and help families gain access to the care they need through medical grants. Helping Kids. Changing Lives.

Icing Smiles: Is a nonprofit organization that provides custom celebration cakes and other treats to families impacted by the critical illness of a child. We understand that simple things, like a birthday cake, are luxuries to a family battling illness. Our goal is to create a custom cake for the ill child, or their sibling, that provides a temporary escape from worry and creates a positive memory during a difficult time. https://www.icingsmiles.org/

Disability Discounts: http://www. dontpayfull.com/blog/free-things-andgrants-for-kids-with-special-needs

Purple Playas Foundation: https:// purpleplayasfoundation.org/ The mission of the Purple Playas is to provide support and resources in pediatric complex chronic care needs and gifting smiles to children and their families.

The Parker Lee Project: http:// www.theparkerleeproject.org While the majority of children get things supplied through insurance, some items are not covered, or not enough supply is provided. The Parker Lee Project can help fill that gap. Supplies offered: enteral supplies (feeding bags, extenders), trach supplies, incontinence supplies, oxygen tubing and cannulas, IV tubing and care supplies, formula, general supplies (gloves, alcohol prep pads, medical tape, 2x2 and 4x4 gauze pads), diabetic supplies, suction catheters & mouth care supplies.

Wheelchair Van Assistance Program: http://www.specialkidsfund.org/ Supporting children with special needs is the core of our organization. Our mission is to provide vehicles to families of these special children across the nation to give them a chance to have the normal experiences that every child has, growing up as a kid.

TinySuperHeros: https:// tinysuperheroes.com/ sending capes to children overcoming any illness or disability. Since 2013, TinySuperheroes has empowered over 12,000 kids all over the world!

Goodrx: https://www.goodrx.com/ find the lowest price for your prescriptions.

Laughing at My Nightmare: https:// www.laughingatmynightmare.com/ Teaching Children that all people deserve kindness and respect, regardless of their differences. We provide FREE assistive technology to people living with any disability and FREE adaptive equipment to people living with muscular dystrophy! Also, on Facebook.

Rare Science: https://www. rarescience.org/about-us/ Accelerating cures for RARE kids. RARE Science has initiated the RARE Bear program, a grassroots community-driven outreach for kids with rare diseases. Community volunteers create one-of-a-kind teddy bears for one-of-a-kind “rare” kids.

The Superhero Project: If your child or teen is living with a serious illness or special need, we would be honored to work with you. Your child will be matched with one of our artists, who will design the superhero they described, creating a visual representation of their strength, courage, and resilience. https://www. superheroprojectkids.org/

The Butterfly Pig: https:// thebutterflypig.com committed to making toys to help represent your child’s medical needs. Explore an ever-growing number of medical toys designed by a nurse on a mission to promote self-advocacy through play.

FACEBOOK RESOURCES:

• Families with Special Needs Connect-Children’s Special Health

Care Services (CSHCS) Kent County parent moderated page

• Special Families’ Corner- CSHCS Ottawa County parent moderated page

• Grand Rapids Area Autism Moms and Dads

• Courageous Parents Networktheir mission is to empower parents and families of children living with serious illness.

• Moms of Trach Babies

• A Very SPECIAL NEEDS Christmas: a group to provide amazing Christmas ideas for special needs children. After the holidays, the page opens for continued help and assistance with therapies, equipment, advice, and anything you need help with.

• 60+ FB groups for special needs family and friends: https://singingthroughtherain. net/2015/10/groups-forspecial-needs-families.html

• Rare Disease Network is your place to connect with every aspect of the rare disease community, both locally and nationally, also at www.rarediseasenetwork.net

• eSpecial Needs-providing the best adaptive equipment and therapy solutions for children and adults with special needs, also at www. especialneeds.com

SUPPORT GROUPS/ PODCASTS/BOOKS:

• http://www.amandagriffithatkins. com Amanda Griffith-Atkins, MS, LMFT is a licensed marriage and family therapist and founder of Amanda Atkins Counseling Group in Lincoln Square, Chicago, but it was not until her son was diagnosed with a rare genetic condition that she discovered her life’s purpose: to help parents of disabled children find their stride. She is also a writer, is on Facebook, and is a guest on several podcasts. See her website for details.

• The Rare Life Podcast by Madeline Cheney, a podcast about parenting children with rare medical conditions. The creator’s son Kimball and her journey since his arrival inspired the show. Episodes consist of her experiences in special needs parenting, parent guests sharing their stories, and education provided by professionals.

• Our Real Rare Life, on Instagram and Facebook.

• Mama Bear Podcast with Susan McConnell is a place for women raising children with special needs to get together and chat about life. Also, the episode with Laura Croft about estate planning for families of children with special needs has been highly recommended by a parent.

• Annette Hines’ book “Butterflies and Second Chances: A Mom’s Memoir of Love and Loss” is the true story of her special needs journey, and the struggle to secure the best possible life for her child. Annette’s Podcast is “Parenting Impossible- The Special Needs Survival Podcast” She has also been a guest on the Mama Bear Podcast.

• Courageous Parents Network: https://courageousparentsnetwork. org/ CPN is a destination created by families, for families, to support, guide and strengthen them as they care for extremely sick children.

• Love That Max https://www. lovethatmax.com “A blog about kids with disabilities who kick butt”

• Sibshops: Sibshops provide brothers and sisters of a child with a disability with peer support and information in a lively, recreational setting. Groups are held in Kent & Ottawa Counties. Contact: Andréa Vugteveen, 616-4603781 or amvugteveen@gmail.com

• Autism Support of Kent County (ASK) We work to make life better and more productive for individuals with autism and their families. In addition to our signature social groups and parent/ caregiver support group, we offer a variety of programs and events. Autism Support of Kent County | Serving the Needs of Kent County, Michigan’s Autism Spectrum Disorder Community

• Autism Support of West Shore www.asws.org

• The Parent’s Guide to Down Syndrome Cowritten by DSDN Executive Director, Jen Jacob. This book offers real stories, practical information, and lots of resources for families from pregnancy through adulthood.

WEST MICHIGAN ACTIVITIES AND EVENTS:

Family Hope Foundation http:// www.familyhopefoundation.org/

Family Hope Foundation | Events (thefamilyhopefoundation.org) Events including Celebration Cinema Sensory Showings!

Children’s Healing Center: The Center is open to anyone from birth to age 26 who is immune-compromised or vulnerable to illness, and their family. Our goal is to create a safe space for kids and their siblings to express themselves, to interact socially and to feel a sense of belonging. We have a diverse population of kids with medically complex conditions.http:// www.childrenshealingcenter.org/ Also offering a series of Dinner & Dialogue- an opportunity for parents and caregivers to find support, connect with other families, and share ways to navigate life.

Certain Hope Community Bringing Hope and Community to families raising kids with disabilities! Free events for the whole family to connect with other families experiencing the same things. http://www.certainhopecommunity.org, also on Facebook.

Compassionate Heart Ministries & Club 404: We offer a fun, Christian, welcoming, safe & social environment for individuals with mild to moderate disabilities aged 14 to 45 to come, hang-out and make friends!

Growing Roots mission is to provide a therapeutic, nature-based learning and working facility that allows all individuals to live a meaningful, satisfying life and to reach their highest potential. Growing Roots utilizes gardening and the care of rescued animals to empower those with autism and other developmental disabilities.Home (wegrowroots.org)

Autism Family Network Autism Family Network - AFN

Sidekicks West Michigan Sidekicks of West Michigan is a nonprofit organization that offers individuals with and without disabilities the education and tools to gain independence and build friendships through guided adventures in inclusive settings throughout West Michigan. https:// www.sidekickswestmichigan.org/

Hope Network https://hopenetwork. org/events/

The Arc Disability Services | The Arc Kent County | Grand Rapids of Kent County advocates for the rights and full participation of all children and adults with intellectual and other related developmental disabilities. We strive to improve systems of support and services, connect families, inspire our community, and influence public policy. We are a non-profit, charitable organization. For an extensive list of community resources in Kent CountyDisability Services | The Arc Kent County | Grand Rapids

Sports:

• Special Olympics of Michiganhttp://www.somi.org/

• No More Sidelines https:// nomoresidelines.orgNo More Sidelines provides children and young adults with special needs an opportunity to play sports year-round and to participate in community events and outings. Based out of Norton Shores, Michigan.

• Challenge Mountain Boyne Falls, MI https://challengemtn.org/ Challenge Mountain offers many opportunities for individuals living with physical, cognitive, and developmental disabilities through year-round adaptive recreation. Register for programs by calling 231.535.2141 or emailing linda@challengemtn.org.

• MyTEAM TRIUMPH https:// www.mttwestmichigan.org/ is an athletic ride-along program created for children, teens, adults, and veterans with disabilities who would normally not be able to experience endurance events such as triathlons or road races.

• Mary Free Bed Wheelchair and Adaptive Sports -competitive teams and clinics designed for individuals with limited mobility and other physical impairments. https://www.maryfreebed.com/ rehabilitation/sports-rehabilitation/ wheelchair-adaptive-sports/

• West Michigan Miracle League EVERY CHILD deserves a chance to play baseball

• The Grand Rapids Eagles Disabled Sports Team provides athletic training for athletes (age 7 & up) with cerebral palsy, muscular dystrophy, spina bifida, visual impairments, spinal cord injuries, and other physical disabilities. The Eagles team trains throughout the year for the Michigan Victory Games, a 4-day athletic competition. We welcome members to practice with us for exercise health and team camaraderie, even if they do not decide to participate in the Michigan Victory Games event. Home | Grand Rapids Eagles Disabled Sports (greaglesdisabledsports.org)

• West Michigan Special Hockey Association mission is to offer an amateur level ice hockey program for children and adults with any developmental disorder. WMSHA is open to any player over the age of 5, male or female, who is physically able to play at any level but unable to participate in any other organized program.Special Hockey | West Michigan Special Hockey Association | Grand Rapids (westmipatriots.com)

• https://miofo.org/ The mission of Michigan Operation Freedom Outdoors is to provide improved outdoor recreation opportunities for wounded veterans and individuals with health challenges; and, to coordinate a support network that facilitates their recovery through connecting with nature. Tracked Wheelchair Reservations – Limited number of chairs available for use at Sharonville State Game Area and other areas as arranged;Accessible Hunting Blind Reservations –Limited number of accessible blinds on public land available;Hunting Guide to Assist Outdoors people – MiOFO certified volunteer helpers are available on scheduled days to provide one-on-one assistance

• Michigan Outdoor Wishmakers - Nonprofit that takes children, young adults, and veterans living with illnesses and/or disabilities on hunting and fishing adventures. www.mioutdoorwishmakers.com Also, on Facebook.

Art & Music:

• Hearts For the Arts https://www. hearts4thearts.com/ our mission is to enrich the lives of ALL people through inclusive public art classes and group events. We also specialize indisability services which include art therapy, entrepreneurial training and more. Our studio is fully accessible. We work with a variety of specific needs including (but not limited to): cognitive and developmental disabilities, mental health disorders and brain trauma injuries.

• Artists Creating Together http:// www.artistscreatingtogether.org/ Artists Creating Together empowers individuals with disabilities to learn, grow, and celebrate through the arts. By bringing together artists, visual and performing arts, and students with disabilities, we can impact the West Michigan community.

• Arts in motion studio providing our community and individuals with disabilities an artistic adventure. https://artsinmotionstudio. org/ Classes are available in visual art, dance & movement, music, drama and more

• Franciscan Life Process Center & Music Therapyhttp:// lifeprocesscenter.org/services/ music-therapy/

Equine (Horse) Therapy:

• The Barn for Equine Learning http://www.thebarnforequine learning.com/ (Lowell)

• Equest Center for Therapeutic Riding http://equestcenter. org/ (Rockford)

• Renew Therapeutic Riding Center https://renewtrc.org/ (Holland)

• H.U.G.S. Ranch https://www. hugsranch.org/ (Byron Center)

• Legacy Stables & Karin’s Horse Connection www. karinshorses.com (Caledonia)

• Fellinlove Farm http://www. fellinlovefarm.com/provides outdoor activities, socialization, and educational opportunities by hands-on animal interactions. All visits must be scheduled.

• Cheff Therapeutic Riding Center https://www. cheffcenter.org/ (Augusta)

• Hestovin Stables Therapeutic Riding Center (Grand Rapids)

Dance:

• Integrity School of Dance Arts Special Needs classes offered for students ages 9-18yrs. Focus on creative movement, turning, rhythm and balance https://www. integritydance.com/ (Byron Center)

• Arts in motion studio providing our community and individuals with disabilities an artistic adventure. https://artsinmotionstudio. org/ Classes are available in visual art, dance & movement, music, drama and more

• Grand Rapids Ballet Adaptive Dance program offers “Explorer Dance” for children with disabilities. Grand Rapids Ballet School | Adaptive Dance Program | Grand Rapids, MI (grballet.com)

RESPITE/CAMPS/CHILDCARE: Childcare: Care.com & greatstarttoquality.org have search options for special needs childcare.

Ikuslife.org and Indian Trails Camp: Over-night and drop-in respites that afford families and caregivers much-needed rest while participants are introduced to the camping experience on an accessible level. Indian Trails Camp - IKUS Life Enrichment Services

Little Mary’s Hospitality House http://www.littlemarys.org/ Nestled in the rural town of Wellston, MI, Little Mary’s offers a free vacation for families facing life-threatening or terminal illness. Families who have lost a child through illness and terminal adults are also welcome.

The Lucas Project: Supporting caregivers by providing recognition, respite & resources. We believe supporting the caregiver is the best way to support individuals with special needs. https://thelucasproject.org/

Fresh Air Camp: https://freshaircamp. org/ A six-day, overnight camp for children who have tracheostomies or respiratory technology needs. Held every June near Cleveland, Ohio. There is no cost for the child to attend.

Center for Courageous Kids: Is a yearround medical camp in Scottsville, Kentucky that serves children and their families suffering from chronic medical conditions or life-threatening illness. Week-long summer camps for children and Family Retreat Weekends are designed to provide respite, recreation and support programs for families who have a child with a chronic or life-threatening illness. The Center for Courageous Kids will never charge a camper or family to attend and functions solely by donations. https:// www.courageouskids.org/

A Mother’s Rest: https://www. amothersrest.org/findaretreat

A Mother’s Rest specializes in coordinating therapeutic respite retreats for parents of children with extra needs. Supporting bio & adoptive moms, dads, and other family caregivers of children and adults with extra needs.

RESOURCES FOR TRANSITIONING TO ADULT SERVICES:

1. Parents should explore the option oflegal guardianship or the many alternatives to guardianship if your child’s special needs interfere with the ability to make financial and medical decisions. Every situation is unique. You do not have to have an attorney to pursue guardianship. Contact the Probate Court in your county of residence.

2. Check eligibility and apply forSSI (Supplemental Security Income) from the Social Security Administration. In Michigan individuals who qualify for SSI also receive Medicaid insurance.

3. Medicaid insurance covers Adult Home Help and Community

Mental Health Services if your adult child is eligible. Adult Home Help is payment for help with daily care. CMH (Community Mental Health) can provide community support such as respite and community living supports.

4. Parents may consider aspecial needs trust or MIAble account if you have assets. This can protect the assets you leave for your child so that your child does not lose their SSI and Medicaid. Those that offer legal assistance may offer additional information on a special needs trust and MIAble account on their websites.

Disability Advocates of Kent County

The mission of Disability Advocates of Kent County is to work alongside people with disabilities as they seek to lead self-directed lives, and to advocate for accessible and welcoming communities. https://www.dakc.us/

The Oasis Community http://oasiscommunity.info/ Assists families in creating sustainable housing alternatives, social connections and fulfilling life experiences

The Arc: The Arc can assist in advocating for individuals with intellectual & devlopmental disabilities to ensure that they are receiving appropriate services in education, healthcare, housing, employment, case management, recreation, and other areas of life. If you need help with…

• Social Security -- We can assist you in applying for social security benefits, or if you are already receiving benefits, we can act as your representative payee.

• Medicaid -- We can also assist you in applying for Medicaid and offer information on other programs and services through the Michigan Department of Human Services.

• Mental Health Services -- We can assist in applying for services through your Community Mental Health (CMH) Agency. CMH can provide community support such as respite and community living supports (CLS).

• Work Incentives Planning and Assistance (WIPA) -- If you are receiving social security benefits and wondering about the impact of work on your benefits, we can help you understand and manage your benefits.

• Self-Determination & hiring my own Staff -- We can help you understand how self-determination works, and the process to hire your own staff.

ASK Social Group-Puzzle Partners: Step into a world of camaraderie and support with Puzzle Partners, an exclusive group for individuals with Level I autism and social challenges aged 18 and above. https://www.autismsupportof kentcounty.org/socialgroups

Free stuff for Adults with Disabilities http://www.meriahnichols.com/freestuff-for-adults-with-disabilities/

Ability Weavers Lowell, MI: At Ability Weavers we provide an integrated work setting in which those with and without special needs work side by side. Together we create beautiful, high quality items for any home or office. www.abilityweavers.com

AYA of West Michigan: A program of Children’s Healing Center for young adults going through a similar lifethreatening diagnosis. Activities include game nights, grill outs and life coaching in a fun and casual environment. Geared for young adults ages 18-26 https://ikuslife.org/rec-connect/

R.E.C. Connect: The R.E.C. Connect program provides opportunities in recreational and social experiences to enhance participants’ health and well-being. This is a year-round program offered by IKUS Life Enrichment Services in partnership with Community Mental Health of Ottawa County. Geared towards adults 18 years of age and older.

Beyond26: Supports adults with disabilities in finding employment in West Michigan through individualized advocacy and networking. We do this by reaching out to local businesses, finding volunteer opportunities, and growing our community. https://www.beyond26.org/

Disability Network Michigan (DNM): As a network, we serve as advocates for inclusion and accessibility throughout Michigan. For us, advocacy is about removing barriers; whether those barriers stand in the way of progress, physically deny access or in the way of thinking about persons with disabilities. We are dedicated to helping persons with disabilities achieve full participation in their community and life and remain self-sufficient.