Topic: The Medicaid Autism Waiver Project

Goal: To review the legislation about the Massachusetts application for a Medicaid Autism Waiver, learn about Autism Waivers in other states, and hear what’s being proposed for Massachusetts.

Conference Call Summary:

Welcome – Beth Dworetzky, Mass Family Voices @ FCSN

Mass Family Voices is a state chapter of Family Voices, a national, grassroots organization of families, friends and professional partners who speak on behalf of children and youth with special health care needs. Mass Family Voices is also home of the Massachusetts Family-to-Family Health Care Information and Education Center. The Family-to-Family Center is one of 31 federally funded, parent-run centers throughout the country. Funding is provided through a 2004 Real Choice Systems Change grant from the Centers for Medicare and Medicaid Services. One Family-to-Family Center activity is to offer topical conference calls on subjects of interest to families of children and youth with special health care needs.

Thank you very much for taking the time to participate in today’s call about the Medicaid Autism Waiver Project. Our presenter is Ann Guay. I’ll let her introduce herself and begin the call.

My name is Ann Guay and I am a Volunteer Advocate for Mass Advocates for Children. I am the Chair of Government Affairs of Advocates for Autism of Massachusetts and serve on the Parent Board of the Autism Support Center, as I am also the parent of a child with autism.

On October 5, 2005, Governor Romney signed the Children's Autism Medicaid Waiver Bill. This bill requires the Executive Office of Health and Human Services (EOHHS) to apply for a Medicaid Home and Community Based Services Waiver for eligible children with autism to receive services.

What is a Medicaid Waiver? An Overview of the Federal Medicaid Waiver

Requirements:

Home and Community-Based Services (HCBS) Waivers were established by section 1915 (c) of the Social Security Act. HCBS waivers began in 1981 to encourage alternatives to institutionalization by waiving certain federal Medicaid Requirements to provide community support services to beneficiaries who would otherwise require institutional care. The state receives a 50% reimbursement for the costs of all services under the waiver. States can waive financial eligibility requirements.

HCBS waivers are granted for an initial period of three years and can be renewed at five year intervals. They must be:

1. Provided to individuals who would otherwise require the level of care provided by an institution;
2. Cost neutral (meaning that it cannot cost more for someone to be under the waiver than in an institutional setting).

Overview of Current Autism Spectrum Disorder (ASD) Waiver Programs

WISCONSIN:
Administering Agency: Department of Health and Family Services
Age Range: 0-22 years
Ages 0-8:
The children are eligible for intensive face-to-face services for a maximum of 35 hours a week for three years.
Ages 8-22:
Child is allocated approximately $10,000 annually to acquire a variety of services available under the waiver. Services include OT (Occupational Therapy), speech, case management, education supports and respite care.
Number of Slots Available: Approximately 1000
Eligibility: Children on the Autism Spectrum
Financial: Must qualify for Medicaid services or the child can be admitted through the Katie Beckett eligibility determination (the family’s income is not used to determine Medicaid eligibility for children with long-term disabilities or complex medical needs that are living with their families).
Coordination with Education: Intensive Services must be coordinated with relevant educational services through the public schools.
Provider Qualifications: The state has established provider qualifications for lead therapists, senior therapists and line staff.

INDIANA:
Administering Agency: Center for Medicare and Medicaid Services and the Bureau of Developmental Disabilities
Age Range: 0-22 years
Number of Slots Available: Approximately 400
Eligibility: Children must have an autism diagnosis. The waiver does not cover children with PDD/NOS (Pervasive Developmental Disorder/Not Otherwise Specified) or Asperger’s Syndrome.
Financial: The child must be Medicaid eligible. Parents’ income is taken into account when determining eligibility.
Services Provided: Applied Behavior Analysis, behavior management, community education, respite care, occupational therapy, speech therapy and nutritional counseling
Provider Qualifications: The state has established provider qualifications for lead therapists, senior therapists and line staff.

COLORADO:
Administering Agency: Health Care Policy and Finance/Medicaid
Age Range: 0-6 years
Number of Slots Available: Approximately 75 beginning 1/1/06
Eligibility: Children must have an autism diagnosis. The waiver does not cover children with PDD/NOS or Asperger’s Syndrome.
Financial: The child must be Medicaid eligible. Parents’ income is taken into account when determining eligibility.
Services Provided: Behavior therapy, occupational therapy, speech therapy and psychological services.
Caps: Children are limited to waiver services in the amount of $25,000 or less each year.
Provider Qualifications: The state has established provider qualifications for lead therapists, senior therapists and line staff.

MARYLAND
Administering Agency: Maryland Department of Education
Age Range: 0-21 years
Number of Slots Available: Approximately 900
Eligibility: Children with an autism spectrum disorder. The waiver does cover children with PDD/NOS and Asperger’s Syndrome.
Financial: Financial eligibility is based on a child’s income. Parental income is not considered.
Services Provided: Intensive individual support services including Applied Behavior Analysis, after school and extended day services, service coordination, respite care and family training.
Caps: Intensive individual support services are limited to 30 hours a week. Respite care is limited to 168 hours a year. Therapeutic integration is limited to 2-4 hours a day, five days a week
Provider Qualifications: All waiver service providers must be approved Medicaid providers and appropriately licensed or certified. The state has established provider qualifications for lead therapists, senior therapists and line staff.

Next in Massachusetts

Initial Issues to be Decided:

• Age Range
• Financial Eligibility
• Services to be covered by the waiver
• Service caps
• Qualification of Service Providers

Proposed Next Steps: A group of interested parties, including providers, advocates, parents and support centers, has met throughout the last year to consider recommendations regarding eligibility, provider qualifications and the range of services to be covered by the new Massachusetts Medicaid Waiver. The group has examined children’s autism Medicaid waiver programs in other states and will make recommendations to EOHHS in January 2006. EEOHS must submit its final children’s autism Medicaid waiver application to the federal government by April 2006. The waiver application will describe the number of slots and range of services the Commonwealth will offer. Once submitted, the federal government will review the application and determine whether or not to approve the Massachusetts children’s autism Medicaid waiver application. The application process can be lengthy, and it is anticipated that it will be some time before children with ASD in Massachusetts will receive services through the autism waiver.

Parents interested in advocacy efforts in support of the new children’s autism Medicaid Waiver can contact Attorney Guay at:

Mass Advocates
(617) 357-8431, ext. 301
Mguay70046@aol.com

Conference Call Questions & Answers

1. Who [what agency] will determine a child’s eligibility for the Medicaid Autism Waiver?
   The Department of Mental Retardation and its new Division of Autism is taking the lead in developing the waiver application.
   
2. For a child to be eligible for the waiver, s/he must be “at risk” for institutionalization. Does that mean right now, or in the foreseeable future?
   It means the child may be at risk for institutionalization right now or down the road.
   
3. Has Massachusetts considered having the Department of Education (DOE) the lead agency for waiver determination [as in Maryland]?
   It does not appear as if Massachusetts will adopt the same model as in Maryland.
   
4. How and where can families get involved in advocacy around the Medicaid Autism Waiver?
   We need families from throughout the state to be involved in advocacy efforts. Parents interesting in assisting in advocacy efforts in support of the new children’s autism Medicaid waiver can contact Ann Guay at Mass Advocates at (617) 357-8431, ext. 301 or Mguay70046@aol.com. Another way to get involved is to become a member of Advocates for Autism in Massachusetts (www.arcmass.org/AFAM/) and be part of advocacy efforts at the Massachusetts State House. It’s very important to go to Beacon Hill and meet with your elected officials. It’s empowering as well. The Commonwealth has applied for the waiver, but there’s no funding for it yet. Remember, your advocacy efforts are not limited to your family. Reach out to friends and extended family members as well and ask them to speak to their Massachusetts state legislators about budget support for the waiver.
   
5. How can families stay updated about what’s happening with the waiver?
   There’s a listserv that provides updates. Send your contact information to massfv@fcsn.org and it will be forwarded to me (Ann Guay), and I’ll get you connected or contact me directly at the e-mail listed above.
   
6. Is Massachusetts proposing a cap on services offered through the waiver, and if so, what will it be?
   This has not yet been determined, although we certainly expect that a cap will be proposed.
   
7. How many slots will there be?
   This has not yet been determined.
   
8. How does this fit with the Autism Division within DMR (the Department of Mental Retardation)?
   The recommendations are being given to the Autism Division.
   
9. How long before the waiver is in place?
   This is a many-step process. In April the application will be submitted to Washington D.C. for approval. Massachusetts must also allocate money in the budget. We’re hoping it won’t be longer than 12 months.

April 11, 2006 is Autism Awareness Day. For more information, visit the AFAM web site at www.arcmass.org/AFAM/

Additional Resources and Supports

Federation for Children with Special Needs – provides technical assistance with special education issues.
www.fcsn.org or 1-800-331-0688

Autism Resource Centers
Asperger’s Association of New England
Phone: 617- 393-3824
Website: http://aane.autistics.org

Autism Alliance of MetroWest
Serving: MetroWest
Phone: 508-652-9900
Website: www.autismalliance.org

Autism Resource Center
Serving: Central Massachusetts
Phone: 508-595-9101
Website: www.arccm.org

The Autism Support Center
Serving: Northeast
Phone: 978-777-9135
Website: http://www2.shore.net/~nsarc/Home.htm

Boston Families for Autism
Serving: Boston
Phone: 617-327-9486

Community Autism Resources
Serving: Southeast
Phone: 508-379-0371
Website: www.community-autism-resources.org

Community Resources for People with Autism
Serving: Western Massachusetts
Phone: 413-529-2428
Website: www.theassn.org/crautismindex.htm

TILL: Autism Support Center
Serving: Greater Boston
Phone: 781-302-4600
Website: www.tillinc.org/index.htm

The Family Autism Center
Serving: Norfolk County/South West
Phone: 781-762-4001 x 329
Website: www.sncarc.org/autism.html

Advocates for Autism in Massachusetts
AFAM
c/o The Arc of Massachusetts
217 South Street
Waltham, MA 02453
www.arcmass.org/AFAM/

Family TIES (Together In Enhancing Support) a statewide information and support network for families of children with disabilities, special health care needs, or chronic illnesses. 1-800-905-8347 or www.massfamilyties.org

The Concord Special Education Parent Advisory Council at www.concordspedpac.org