Resources

most family caregivers (54%) reported that they did not have a plan for their loved one's future.
FINDS Survey 2017

Future Planning

The Arc’s Future Planning forPeople With Disabilities is an excellent national resource for families. In addition to broad national policy topics, there are webinars, tools to build a life plan for your loved one, and search features for trust support attorneys and financial advisors in the area. Click on the Center for Future Planning for tools and resources.

The Arc Michigan is full of state specific information and resources.  From here you may find your local Arc and relevant tools to support the lives of your loved one.  Each Chapter has unique offerings to support families in their community.

National Academy of Elder Law Attorneys (NAELA) maintains a national directory organized by state of lawyers with expertise in crafting special needs trusts and other services.  

The Michigan Chapter (MINAELA) is the state directory of attorneys; its organizational mission is to enhance the quality of life for older adults and persons with disabilities.

The Special Needs Alliance (SNA) is a national organization of attorneys committed to the practice of disability and public benefits law, local directory and Special Needs 101 consists of a number of relevant resources and handbooks; ABLE, Special Needs, Government Benefits and Life Care Planning.

The Academy of Special Needs Planners, a network of financial planners and lawyers, provides resources on special needs planning and a directory of planning professionals, Pooled and ABLE trusts.  Can ask questions on-line, good Q&A section.

ABLE National ResourceCenter (ANRC) - Founded and managed by the National Disability Institute, the ANRC's goal is to provide consistent, reliable information concerning the benefits of an ABLE account with Decision Making Guides. MiABLE Achieving a Better Life Experience, Michigan specific.

Planned Lifetime Advocacy Network (PLAN) based out of Canada an interesting approach with five components used to drive a good life universally- loving friends and family, a home of one’s own, financial security, participation in decision making and ability to contribute their unique gifts.  A supplemental resource to planning offering food for thought.

Families Helping Families -Mentorship and Peer Support

Parent to Parent USA mission, to support a national network of Parent to Parent programs to ensure access to quality emotional support for families of individuals with disabilities and/or special health care needs. National and State by State directory of Parent to Parent programs and resources.

The Family Center is Michigan’s statewide parent-directed center within Children's Special Health Care Services (CSHCS) and the Michigan Department of Health and Human Services (MDHHS).  The Family Center offers emotional support, information, and connections to community-based resources to families of children and youth with special healthcare needs.

Michigan Family toFamily (MI F2F) is staffed by family members with experience raising a child with special health care needs. F2F can help navigate the maze of health care services and programs. They provide information and resources to families to get the health care services and supports they need. State resources broken down by county and area of interest for children and young adults.

Michigan Alliance for Families is a statewide resource to connect families of children with disabilities to resources to help improve their children’s education (26 years and under). Families can connect directly to a Regional Parent Mentor via this website for a more individualized assist.

Benefits, Entitlements and Publicly Funded Services

Social Security Administration online services allow individuals to apply for retirement, disability, and Medicare benefits online, check the status of an application or appeal, request a replacement Social Security card (in most areas), print a benefit verification letter, and more. One can also access information regarding Supplemental Security Income.

Helpful SSA hints: Those who can’t complete their business online can call SSA toll-free at 1-800-772-1213 between 8:00 a.m. and 7:00 p.m. local time to speak to a representative. For quicker access to a representative, try calling early in the day (between 8 a.m. and 10 a.m. local time) or later in the afternoon (between 4 p.m. and 7p.m. local time). They are less busy later in the week (Wednesday to Friday) and later in the month. We also offer many automated telephone services 24 hours a day, without speaking to a representative.

While appointments are not required, they are strongly recommended. Offices tend to be less busy later in the day, later in the week, and later in the month.  A directory of local offices is available by clicking here for at SSA office.

MIBridges is a streamlined online site where individuals can explore eligibility for several different assistance programs, apply for Food Assistance, Health Insurance Benefits to name a few and manage your case in a one stop format.

Michigan Health and Human Services site provides information regarding Food Assistance programs, many other assistance programs are defined, including Home Help.

This extensive list of Community Mental Health Service Programs found on the Michigan.gov Health and Human Services site is a statewide directory providing agency contact information.

Oakland County HealthNetwork (OCHN), Detroit Wayne Integrated Health Network (DWIHN) and Macomb County CMH Services (MCCMH) are the Community Mental Health Service Programs in the tri-county area of SE Michigan.  Crisis intervention, access and eligibility for publicly funded services are offered within these agencies.

Dementia and Alzheimer's Disease

Eunice Kennedy Shriver Center, part of the University of Massachusetts Chan Medical School, is dedicated to understanding and improving the challenges faced by individuals with intellectual and developmental disabilities (IDD) and/or behavioral health disorders as well as supporting their families.  In this section information on the topic of dementia and adults with intellectual and developmental disabilities.

The National Task Group on Intellectual Disabilities and Dementia Practices offers a number of resources, trainings and insights.  National family caregiver On-Line Support Groups are held virtually every month.  Publications may be downloaded for review.

Alzheimer’s Association - Developmental Disability Supportive Services Program provides education programming, behavioral consultations, and activity consultations to agencies and individuals caring for people with developmental disabilities and dementia or those at risk for developing dementia.  These services are based out of its Greater Michigan Chapter.

Social Recreational Opportunities

Troy Recreation Adaptive program offers a wide array of social networking and recreational opportunities as well as outings for individuals with disabilities.  Seems like something for everyone.

Sterling Heights Adaptive program has a bike club, yoga, fitness, kickball, theater outings and dances to name a few program offerings.

Metro Parent for Southeast Michigan comprised an extensive list of social and recreational opportunities offered in the surrounding counties.

Michigan Adaptive Sports is a chapter of Move United providing sports, recreation and fitness opportunities beyond the traditional bowling or softball. Good resource for more advanced athletes.

Out and About in Oakland County is a volunteer effort with a focus on spectator sports that cost $10 or less to participate. Oakland County Moms offers a similar resource more broadly based.

Transportation

MyRide2 helps seniors and adults with disabilities in Oakland, Macomb, Washtenaw, and Wayne counties in Michigan find transportation. Need a ride? Check out this easy to use directory.

SMART is Southeast Michigan’s only regional public transportation provider, offering transportation for Macomb, Oakland and Wayne Counties. Metropark Express, the Detroit Zoo and Farmington FLEX programs worth looking at.

Faith and Fellowship

Woodside Bible Church offers an array of opportunities for individuals with intellectual and developmental disabilities at its Troy campus

Rejoicing Spirits is a national effort hosted locally at First Presbyterian Church in Birmingham, opportunities for fellowship and a “no shush” service.

Faith and Light USA/East is an ecumenical association, who meet together on a regular basis in a Christian spirit.  There are no local communities noted but virtual opportunities offered. Influenced by Jean Vanier.

Kensington Community Church seeks to partner adults and youth who need special attention with a 1:1 volunteer.

Northridge Church provides a bible study for adults with intellectual disabilities at its Plymouth campus as well as other offerings.

Our Lady of Victory Catholic Parish offers once a month services to individuals with special needs.

Housing and Support Initiatives -National and Local

The Center for Independent Futures out of Evanston Illinois has developed a New Futures Initiative Housing Guide containing group facilitation tips and supported living guidance.  Good resource for groups of families looking to organize their efforts to develop housing solutions for their loved one.

Charting the Life Course Nexus is a framework to drive transformational change, helping families and individuals organize their ideas, vision and goals to build the services and supports they need.  The website is full of downloadable tools.  Charting the Life Course Guide is a helpful overview of the key principles.

Solutions for Adult Interdependent Living (SAIL Housing Solutions) local Michigan group of parents committed to sharing ideas about supported housing solutions through mentorship, education, advocacy and an opportunity to connect with others in the tri-county area.  Membership provides monthly opportunities, Sailing Lessons, Friendship Connect and access to a Housing & Service Resource Guide for parents.

Academic Resources

Wayne State University is home to the Michigan Developmental Disabilities Institute (MI-DDI) With a mission to contribute to the development of inclusive communities WSU is one of 67 University Centers for Excellence in Developmental Disabilities (UCEDD).  On this site, training opportunities are offered for families and professionals.

The University of Minnesota Institute on Community Integration is an informative resource. Their publication Impact has relevant information three times per year containing articles with practical information useful to professionals, advocates and families. Worth reading.

Think College is dedicated to inclusive higher education opportunities for students with intellectual disabilities.  A state by state directory is available with programs in the US listed.

Miscellaneous Tools and Manuals

Community Resource Manual many good contacts can be found within this document, developed as an Oakland County document but represents the tri-county area.  Health networks, protection agencies, support groups, food and utilities assistance programs; very inclusive.

Oakland County Public Mental Health Service Handbook is generated by Oakland County Integrated Health Network but provides a number of descriptions of services that are helpful for families to understand.

Good Reads - Documents and Articles

The Family and Individual Needs for Disability Supports (FINDS) survey was initially conducted by The Arc of the United States in 2010. It was updated in 2017 through a collaboration between the Research and Training Center on Community Living (RTC/CL) at the University of Minnesota and The Arc to understand:

  1. What are the challenges families face meeting the support needs of their family member?
  2. What are the economic implications of caregiving?
  3. How does caregiving affect caregivers and what supports do they need?

The AARP has a number of instructional articles tailored to aging family caregivers:

How Parents Can Build a Support System for Adult ChildrenWith Disabilities 

Parents Are Creating Communities for Their Grown ChildrenWho Have Special Needs 

Autism Spectrum News’ 50th issue is all about sibs!  Find 20+ articles about sibling stories, resources and more in this issue.

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